Archive for 2019

Global Webinar Series – Winter 2019 Recap

December 16th, 2019 by Global Down Syndrome Foundation

WINTER 2019

CPAP, Hearing Aids, & Glasses, Oh My! How to Help my Child & Adult Wear their Medical Equipment


What You Need to Know


Overview & Speakers:

This webinar will explain the frequency of diagnoses and importance of adherence to help your child and/or adult wear their medical equipment. Key takeaways include:

Common types of challenging behaviors that children and adults with Down syndrome may have when working to wear medical equipment

A step-by-step plan for increasing use of medical equipment

Motivators for avoiding wearing medical equipment and how to manage these behaviors

Lina Patel, PsyD

Lina Patel, PsyD joined the Sie Center for Down Syndrome at Children’s Hospital Colorado as Director of Psychology in November of 2012. She has extensive experience in treatment planning, parent support, diagnostic evaluation, and intervention. As she believes that behavioral challenges arise for many different reasons, she prides herself in coordination of care with community providers, educational supports, medical team members, and caregivers. Additionally, she conducts clinical research to better understand how neurodevelopment impacts behaviors.

Overview: Click to Listen


Powerpoint Presentation: Click to Download


Additional Handout: Click to Download


Questions & Answers:

Gail, a member of the Down Syndrome Association of Delaware:

1. How do you get your child with DS and Autism to wear glasses for more than 4 seconds?

This is a difficult question, as sensory issues are particularly challenging for children who are dually diagnosed. Is there a time of day that your child is particularly calm? Maybe when eating or in the bathtub? Without knowing specifically what your child’s level of understanding is, I would also consider using a visual timer (try the Countdown timer) to teach your child that the glasses will come of in 4 seconds to start, then maybe 7 seconds, and then increase from there. Since the visual timer looks the same, even when the time is increased, perhaps that may help your child learn how long before practice is done.

2. How do you get your child to not pull out their g-tube, pull out their hearing aids, and throw their glasses when they have severe sensory issues?

I believe that children with sensory issues get so overwhelmed and focused on the distress they are experiencing that they try to escape from the situation that is distressing. The best advice I can give is to start with desensitization to one of the pieces of equipment that you are referring to. It makes most sense that you start with the g-tube. You may need to do a combination of denying access to your child’s g-tube and at the same time keeping your child’s hands busy at all times. I’m not sure how old your child is, but some families have used a wrap over the g-tube site or placed their child in something like a onsie or a leotard to reduce access.

3. Can you give me tips on how to operate as a more normal family in a public setting while tending to all these medical needs?

I can imagine the distress that your family must experience with a very medically complex child. I feel like your question may require further discussion about what specifically feels the most distressing. Then, I would work on that part first. Is your child a picky eater? Is it difficult to go out to restaurants together? Is it more related to something else? Please reach out to discuss further.

Lexy, a parent from Verona, WI:

1. CPAP mask! He can take it off himself in the night. And he has nothing that is a high enough motivator. Help!

The first thing that I would think about is whether he is taking the mask off intentionally or without awareness. If it is intentionally, there are two options. First, some parents will sleep with their child at first to replace the mask each time it is taken off. This is obviously stressful for the family and you would then need to work on fading yourself out of his bedroom again once your child learns that taking the mask off is not an option. If you think that your child is taking it off without realizing it (meaning in his sleep), then I would work with your CPAP team to see if your child needs a different mask, if you can use a sweatshirt to fish the tubing through to reduce the chance that it moves around and then your child takes it off.

2. Any tips for helping him wear a watch?

If your child has sensory issues around wearing a watch, I would start with having your child wear the watch during an activity where he is most distracted. The distraction can help reduce the focus on the feeling, resulting in him getting used to it. You can also use a visual timer to help him know just how long he has to wear it before he gets to take it off. Gradually increasing the time on the visual timer will help him get used to the feeling to the point where he no longer feels the need to take it off or isn’t bothered by it. You can use duct tape to secure the band too so that he can’t take it off for the short time that you are having him practice wearing it.

Christina, a parent in Kearney, NE:

1. My son chews on his glasses and has broken 2 pairs. What do I do?

I would consider speaking to an OT that specializes in sensory issues. They may be able to suggest other ways for your child to get oral input so that glasses aren’t used to get that input. Chewelry can be a great tool to consider using. Remember, your child won’t just start using the chewelry because they have it around their neck to chew on. You will have to teach them to replace the glasses with the chewelry. You would need to sit next to him during times that he is more likely to chew on his glasses. When he reaches for his glasses, you will need to redirect his hands to the chewelry.

2. My son also hides his glasses, we’ve lost 3 pairs. What should we do?

Kids can be so creative in how they “get rid of” glasses. I would review what are the highest risk times that he hides them (When in the car? When transitioning from one place to another? When playing alone in a room?). During those times, start out with full level supervision. Teach your child through routine that they can place their glasses in a case or give them to you if they need a break. That way, even if they “get rid of them” or don’t want to wear them for the time being, they can have control over asking for a break, rather than just getting rid of them.

Jenny, a self-advocate in Boise, ID:

1. If you fall asleep each night with your CPAP mask on, how can you increase the length of time you use it? The fit and pressure are adjusted so that’s not the problem. We’ve been using the mask nightly for 2 years but can’t get usage beyond a couple of hours.

I hate to suggest this, especially without knowing how old your child is, but many of our families will sleep in the room with their child so that they can replace the mask. The more practice your child has at night wearing it, the less likely they will take it off because they are used to the feel. I would suggest making sure that you are not laying in the bed, but maybe next to.

Sandra, a parent in Mission Viejo, CA:

1. My son has a BAHA that attaches magnetically behind his ear. He has so much anxiety when he wears it—but he can’t explain why. What insights do you have on if it’s a sensory feeling of the bone conduction or if it’s because he’s hearing more than he normally does.

Without being able to ask more questions about what behaviors your child exhibits when the BAHA is one, I would guess that it is probably because of the new sounds heard. To manage anxiety, be clear about how long your child has to wear the BAHA during the practice session. Then, when you see that your child looks startled or upset, label what sound your child may have heard. For example, you might say “Oh, it was loud when I closed the door, huh?” Remain calm as you label what you think your child heard.

Kristen, a parent in Laramie, WY:

1. How to get a cpap mask on a toddler without head thrashing

Have you tried modeling putting the CPAP on a doll or on yourself. Whether you put it on yourself or a doll, sing a song your child is familiar with. When the song is done, take off the mask. Then say “Your turn”. Your child knowing that practice is only for a certain amount of time can help reduce head thrashing.

2. Reward system ideas for young toddlers (almost 2)

Toddlers are at an age where they love social engagement. Social engagement like singing songs or playing with toys together is a great reward. Have your child put the equipment on during practice and then engage in play or singing.

3. Best ways to introduce glasses to toddlers

I typically introduce glasses to toddlers in setting where I would have more control and where it is less stressful, like mealtimes for some kids or during bathtime. They are distracted and you can simply remind them to put glasses back on in a more controlled manner. If your child does take them off during that time, without a big reaction, you would simply replace the glasses and then continue to play in the bathtub or continue to interact while feeding.

Anna, a parent in Arvada, CO:

1. How do we get our son to keep hearing aids on at school and other places that we can’t directly supervise him?

This would require a careful discussion with the school team about how hearing aid use impacts access to education on the IEP. In my experience, starting with use at school during a structured time when one on one attention can be given works best. Avoid starting in the louder settings like gym and the cafeteria.

2. What about when it is too loud in a restaurant/ cafeteria/ gym? He seems overwhelmed with his hearing aids on in places like that and we very often just take the hearing aids off preemptively. Is there a better way to handle extra loud situations?

I believe that louder settings require a slower desensitization process. Use a visual timer to help your child tolerate wearing the aids in these noisier settings for a short amount of time. That also allows you to end on a good note. Increase the amount of time they are worn in this setting over time as your child gets used to them. Some aids also have an app that allows parents to decrease the volume on aids in these louder settings. Teaching your child to advocate for themselves and to say it is too loud could then allow you to decrease the volume but keep the aids in.

3. He eats them!!! How do we get him to stop chewing on his ear molds when he takes them off!??

Look for something that has a similar texture that he can chew (chewelry for example). Remember, your child won’t just start using the chewelry because they have it around their neck to chew on. You will have to teach them to replace the glasses with the chewelry. You would need to sit next to him during times that he is more likely to chew on his glasses. When he reaches for his glasses, you will need to redirect his hands to the chewelry.

Allyson, a parent in Albuquerque, NM:

1. Our insurance expects compliance with our daughter’s CPAP to be at 6hrs per night 80% of the month to continue their coverage. We were able to extend it month to month but was causing so much anxiety for us parents. Any tips or ideas dealing with insurance so we can continue a gradual desensitization to her CPAP?

Unfortunately, the challenge that you have is one that I have encountered many times and unfortunately have not found any tricks to. We continue to advocate on our end and try to explain to medical supply companies all that we are doing to get the child to become complaint with wearing the equipment. Unfortunately, it is then up to them.

Danielle, a parent in Denver, CO:

1. We did a lot of CPAP practice/desensitization a year ago and our son accepts putting it on at bedtime. The issue is he repeatedly takes it off all night. The folks at the sleep clinic want us to continue to practice during the day but it’s hard to see how that will help with him keeping it on all night, and it’s just such a hassle to drag out every day. Is daytime practice really that effective in this situation?

It depends on why your child is taking it off. If your child is taking it off without knowing it (still asleep), daytime practice can be helpful, as it gets the child to become desensitized to the sensation or feel of the equipment, thus reducing the unconscious need to take it off at night. Some of our families will also gut it out for a few weeks and just sleep in the room with their child and replace the mask each time it is taken off.

2. Also, our son has ruined a couple of pairs of glasses by chewing on them. We’re only letting him wear the under complete supervision. As a result he wears it at school but hardly ever at home since it’s so easy to turn our back and then another pair of glasses is ruined. Any suggestions?

I would have your child play, relax, sit within line of sight when at home. Provide positive attention and praise for keeping his glasses safe. You may also need to give your child something different to chew on (chewelry) and continuously practice having your child chew on the chewelry instead of their glasses.

Laura, a parent in Midlothian, VA:

1. How would you adjust these steps for a child that has no concept of time (aka a 2 year old).

I would have practice occur during play time with your child. Put the equipment on and then begin playing. If your child reaches for their equipment or successfully takes it off, place your hand on the toy they are playing with or move the toy away and indicate that the equipment first must be put back on, and then you can continue to play.

2. Regarding CPAP if a child won’t accept pressure while awake is it a bad idea to put it on after they fall asleep, even if you are working to get them to accept during the day?

I am not a fan of putting it on when they fall asleep only because it can be even more distressing and alarming if your child wakes up in the middle of the night with it on their face. They will have a much more difficult time practicing when awake if they have this experience. That being said, I have many families who have done this and it is been fine.

Mary, a parent in Oakland, CA:

1. My son started off strong using his CPAP machine but after 10 or so nights he refuses to wear it. How do I start over?

Start over the same way you desensitized him the first time. That way, it is a familiar process. I would also think about what could have resulted in the refusal. It could be that he is testing whether you will stay first with the use of CPAP or it could be that he had a cold and that the CPAP was more distressing during that time. Either way, I would follow your previous procedure.

Tangi, a parent in Cranbaury, NJ::

1. How do you deal with insurance companies with cpap machines with the required amount of hours. they require at least 4 hrs which is long in the beginning.

Unfortunately, the challenge that you have is one that I have encountered many times and unfortunately have not found any tricks to. We continue to advocate on our end and try to explain to medical supply companies all that we are doing to get the child to become complaint with wearing the equipment. Unfortunately, it is then up to them.


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Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.

Born This Way

December 5th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 3 of 4

She Stars in a Three-Time Emmy Award-Winning TV Show and Has Two Businesses- and One Big Message for Everyone.


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

“DON’T LIMIT ME!” was a battle cry speech that Megan Bomgaars crafted back in 2013 as a high school student in Colorado Springs, Colorado. Fully included herself and part of her state champion cheerleading team, Bomgaars wrote the speech for a school project on inclusive learning. When the video of that speech hit YouTube, Bomgaars suddenly became a viral sensation, which helped catapult her career in television as a key cast member of the three-time Emmy Award-winning TV show, “Born This Way.”

Her perfectly crafted words truly convey Bomgaars’ life philosophy: All people, with or without Down syndrome, can achieve their dreams if they are not limited and have equal opportunity to succeed.

Before her big television break, Bomgaars was invited to numerous speaking engagements and able to spr ead her message of inclusion to audiences all over the world— something she continues to this day. She has presented to nonprofits and corporations in 34 of the 50 states and around the world in countries including Trinidad, Tobago, Spain, Canada, and Mexico. In 2015, Bomgaars represented the Global Down Syndrome Foundation at the White House to attend then-First Lady Michelle Obama’s “Beating the Odds Summit” focused on students attending post-secondary school against the odds. She and Devon Adelman were the first and only students with Down syndrome to attend.

A TV STAR IS BORN

In 2015, Bomgaars was at the National Down Syndrome Congress (NDSC) Annual Convention promoting medical care and research for Global. Producers from A&E were at the convention scouting talent for a reality show idea that would star people with Down syndrome. They attended the workshop at which Bomgaars spoke and recognized her from her “Don’t Limit Me” YouTube video. She pretty much landed the role on the spot.

Much like Bomgaars’ YouTube video, A&E’s “Born This Way” was an unexpected success, not only weathering ratings and five seasons but garnering 16 Emmy nominations, three Emmy Awards, and two Critics’ Choice Awards. The reality series features seven adults with Down syndrome who pursue their passions and lifelong dreams, explore friendships and romantic relationships, and overcome obstacles, while providing a window into the lives of people with the condition.

A special holiday finale episode will air on A&E in December 2019. A digital web series, which will pick up where the fourth season left off, is also in the works.

On the show’s website, Bomgaars is described as a “woman on a mission” who has the “self-imposed mandate to save lives.” When asked about her future after the hit show, she is very clear: “I am an ambitious person, and I have a lot more I want to accomplish for myself and for other people. I’m going to do it all.”

THE NEXT CHAPTER

Bomgaars’ television career allowed her a platform to turn her interests and hobbies into profitable businesses. She began pitching her clothing brand, “Megalogy,” which started as a fun tie-dye project for her friends and family, to retailers around the world. Her persistence and hard work resulted in a partnership with Sanrio’s “Hello Kitty” brand! Bomgaars sells her clothes online at megology.com.

Following her success in the clothing industry, Bomgaars teamed up with ArtPop Cosmetics to develop cosmetics. She hand-selected colors and products for a collection of lipsticks, which she named “Don’t Limit Me.” Moreover, she modeled the makeup in a stylized photoshoot organized by ArtPop Cosmetics to market the brand.

Bomgaars has moved back to Colorado and reconnected with Global. She spoke at Global’s World Down Syndrome Day celebration at the state capitol and at the Grand Opening Ceremony of Global’s new headquarters.

During the summer, Bomgaars was the opening keynote speaker for Global’s “Advocacy Workshop for Families, Science & Society” at the Trisomy 21 Research Society biennial conference in Barcelona, Spain, and the keynote at Global’s Research and Medical Care Roundtable at the NDSC Annual Convention in Pittsburgh, Pennsylvania.

“At Global, we stress the importance of highlighting our self-advocates at every event,” says Michelle Sie Whitten, Global President and CEO. “How can we have conversations about the future of people with Down syndrome if they’re not in the room, contributing to the conversation?”

“Barcelona was really my first event all about science. To be honest, I was nervous and excited,” says Bomgaars.

“We were in a new country with world-renowned scientists and doctors from all over the world, many of whom spoke different languages, and Megan just knocked it out of the park,” says Kris Bomgaars, Megan Bomgaars’ mom.

To top it all off, Bomgaars has started college at the University of Colorado at Colorado Springs to study communications and business.

“Megan is a leader and role model,” says Whitten. “She has incredible poise, timing, and intelligence. She also works very hard to be successful. That is why were are so proud to present her with our 2019 Quincy Jones Exceptional Advocacy Award at Global’s Be Beautiful Be Yourself Fashion Show.”

Clearly, this 26-year old powerhouse is going to do it all.


Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

Be Beautiful Be Yourself Models Press

December 4th, 2019 by Global Down Syndrome Foundation


Models In the News:


Megan Bomgaars

Archie Eicher

Sevy Eicher


Charlotte Fonfara-LaRose

Courtney Gaines

Allison McCollam

Featured Articles:


Supermodel Amanda Booth & Actress Megan Bomgaars to Receive Prestigious Global Down Syndrome Foundation
“Quincy Jones Award”

Supermodel Amanda Booth & Actress Megan Bomgaars to Receive Prestigious Global Down Syndrome Foundation
“Quincy Jones Award”

Supermodel Amanda Booth & Actress Megan Bomgaars to Receive Prestigious Global Down Syndrome Foundation
“Quincy Jones Award”

Courtney Gains: Advocate for
Down Syndrome Awareness

Choctaw teen becomes first to represent
Oklahoma in international Down Syndrome fashion show

Adopted Conroe siblings to rock runway
for Down syndrome”

Ariana Perez: Annapolis teen is ambassador at Global Down Syndrome
Be Beautiful Be Yourself Fashion Show

Choctaw Student With Down Syndrome Is First To Represent Oklahoma In
Fashion Show

Katy Teen with Down Syndrome Helps Raise $2.5M on Fashion Show Runway

Shop to Support Global!

December 1st, 2019 by Global Down Syndrome Foundation

Great news for holiday online shoppers! When you buy anything on Amazon, a portion of your purchase price will be donated to Global Down Syndrome Foundation!

Simply start your shopping through this link to AmazonSmile. There is no difference in prices or in products and it’s easy!

Thank you for your continued support of Global Down Syndrome Foundation. We wish you a wonderful holiday season!

Global Honors Supermodel Amanda Booth with Quincy Jones Exceptional Advocacy Award

November 15th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 3 of 4

What happens when a supermodel has a baby with Down Syndrome? Well, she gets him a modeling contract too (obviously)!.


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

AMANDA BOOTH TRAVELS the world for her career, modeling in fashion editorials and advertising campaigns for companies and publications such as Italian Vogue, Lancôme, Elle, Target, and more. She also has appeared in network television shows such as “Community,” “Hot in Cleveland,” and “Maron.” Yet, Amanda credits her greatest journey to one that takes place right in her own home: parenting her son, Micah, who happens to have Down syndrome. In 2014, Amanda and her husband, Mike, became first-time parents, with all the same questions and fears new parents typically have, plus one that took them by surprise: What is Down syndrome?

The couple embraced Micah from the beginning, and by the time he was 2 years old, his mom had already secured him a modeling contract as well — an act of a mother ’s love but also an act of advocacy for people with Down syndrome in the modeling industry. “We wanted to show the world how beautiful Down syndrome is,” says Amanda.

“We wanted to show the world how beautiful Down syndr ome is,” says Amanda.

Amanda started to share her inspiring journey of motherhood on her social media accounts @lifewithmicah and @amanda_booth. Micah’s story then spread to magazines and online publications, ranging from feature stories and interviews with journalists to guest blogs and articles written by Amanda herself. The mother and son pair have been featured in Harper’s Bazaar US and Australia, Glamour Magazine UK, Mother’s Magazine, Down Syndrome World, The Mighty, and more. Most recently, in September, they were on the cover of Vogue Living Netherlands, making Micah the first person with Down syndrome to be featured on a Vogue magazine cover.

Amanda has used her modeling for fashion retailer Anthropologie to promote Global as well. As the face of the mega brand’s Mother’s Day campaign, Amanda helped raise thousands of dollars for Global’s research and medical care. This year, Amanda will be awarded Global’s prestigious Quincy Jones Exceptional Advocacy Award at the Be Beautiful Be Yourself Fashion Show, the largest fundraiser for Down syndrome in the world.

A PERSONAL JOURNEY OF LIFE, LOVE & ACTIVISM

Amanda and Mike did not learn that Micah had Down syndrome until he was 4 months old.

“I had never met someone with Down syndr ome before. We had a lot of fears, questions, and concerns about what that meant.”

About three years later, Micah received the dual diagnosis of Down syndrome and autism. “Because we got to know Micah as Micah first, his official diagnosis didn’t feel heavy. Ultimately, it was just words on a piece of paper. He was still our funny, lively boy who we love and care for.”

Mike, who is extremely supportive of Amanda’s advocacy, agrees.”

“We believe that Micah will ha ve a wonderful, full life. But we do need to make sure he has access to ex cellent health care.”

Micah was born with hypothyroidism and a very weak immune system. As a result, his interactions with the outside world were limited, and his growth and development were stunted.

“It wasn’t until Micah’s pediatrician looked beyond the fact that it was typical for kids with Down syndrome to have a weak immune
system and instead addressed Micah’s health in a more adequate way that he started to get better,” Amanda remembers.

After receiving the correct diagnosis and taking proper medications, Micah’s health was thriving.

“It’s not enough to accept that certain things happen as a part of a condition like Down syndrome. The key to our children’s future is understanding why and how we can help them receive excellent medical care.”

Amanda says their advocacy work happened very organically.

“We already had been given this large platform through my career and social media,” says Amanda, whose Instagram accounts have more than 150,000 followers combined. “When we learned that Micah would have Down syndrome, it felt like our purpose to share our journey with the world.”

She and Mike started receiving letters from families asking questions and thanking them.

“It wasn’t until then that we started to realize how much we were actually helping families,” Amanda says. “We remember what it felt like getting the diagnosis, so we shared it all, the beautiful moments and the struggles.”

As Micah’s face became more well known in the social media and Down syndrome communities, organizations and publications began reaching out to feature their family. Amanda started writing for and being featured in parent magazines. So while working hard to be good a mother and a successful model and actress, Amanda took on another big job as an activist.

CONNECTING WITH GLOBAL

“Global really opened our eyes to the disparity in research funding for Down syndrome from our National Institutes of Health,” Amanda explains.

When Micah was still a baby, Amanda and Global’s President and CEO connected by phone and talked for over an hour, bonding immediately over their children. Later that year, Amanda, Mike, and Micah attended Global’s annual Be Beautiful Be Yourself Fashion Show, which Amanda defines as a transformational moment in their journey.

“Micah had just turned 1, and it was still a very scary time for us,” Amanda remembers. “But when we walked into the fashion show, we were surrounded by thousands of people with Down syndrome and their families who were so happy. And we met incredible leaders truly making a difference in our community.”

That year, 1,400 attendees, including Hollywood celebrities such as Hillar y Swank, Queen Latifah, John C. McGinley, and more, came to Denver for the event, raising $2 million. To date, the event has raised over $18 million for Down syndrome.

“For the first time as parents, instead of feeling scared for Micah’s future, Mike and I felt excited and hopeful.”

She realized they could help families on a larger scale, by advocating for research and medical care with Global.

The family now attends the event every year, and Amanda has been a powerful spokesperson for Global, including partnering for multiple years with retailers and influencers for Global’s Mother’s Day campaign. In 2018, Amanda was the face of Global’s Mother’s Day campaign with Anthropologie, and in 2019, she rallied the support of her tribe of mommy bloggers to help Global create a special video to pay tribute to the holiday.

In addition to supporting Global’s work, Amanda has been heavily involved with other nonprofits, such as Ruby’s Rainbow and Changing the Face of Beauty.

WHAT’S NEXT?

“I’m just a mom who loves my son and wants the best life for him,” Amanda states. “I want other people to see my son the way I see him. Every person deserves to feel like they belong.”

Amanda will receive Global’s prestigious Quincy Jones Exceptional Advocacy Award along with co-awardee Megan Bomgaars at the 2019 fashion show in November. After learning of Megan’s accomplishments as an entrepreneur, TV star, and public speaker and seeing her high-fashion makeup line photos, Amanda is very excited to meet Megan and talk about their shared mission of inclusion and equality.

“I want to thank the parents before us who fought hard for our kids. People with Down syndrome are slowly being accepted into society, able to attend public school, have careers, and get married. I want to thank Global for ensuring our federal government prioritizes Down syndrome research funding to improve health outcomes,” Amanda says. “But the best way to thank them is not by saying ‘thank you’ — it’s by supporting their truly transformative, effective advocacy work.”


Like this article? Join Global Down Syndrome Foundation’s Membership program today to receive 4 issues of the quarterly award-winning publication, plus access to 4 seasonal educational Webinar Series, and eligibility to apply for Global’s Employment and Educational Grants.
Register today at downsyndromeworld.org!

At Global’s 11th annual Be Beautiful Be Yourself Fashion Show, a surprise announcement was made by Noreen Salah Burpee, Executive Director of the Salah Foundation, and delivered by 9News emcees Kim Christiansen and Tom Green. The Salah Foundation matched $75,000 during the live auction that will go to a much-needed Computer Training Class at Global’s new Education Center that was made possible by a transformative $1 million gift from Salah Foundation in 2017.

Sold-out event attracts over 1,400 guests from 25 states and 10 countries raising life-saving and transformative funds for Down syndrome research and medical care

At Global’s 2019 Be Beautiful Be Yourself Fashion Show: (Left) Quincy Jones presents his namesake award, the Quincy Jones Exceptional Advocacy Award, to supermodel Amanda Booth; (Right) DeOndra Dixon, Jamie Foxx, Charlotte Fonfara-LaRose, Michelle Sie Whitten, Kennedy Garcia, Tim Harris, Megan Bomgaars

Press Contacts:
Rejena Carmichaelrcarmichael@globaldownsyndrome.org | C: (240) 603-5494
Anca Callacall@globaldownsyndrome.org | C: (720) 320-3832

Denver, CO, Nov 04, 2019 (GLOBE NEWSWIRE) –This past weekend, Global Down Syndrome Foundation (Global) raised a record breaking $2.5 million at their Beautiful Be Yourself Fashion Show, held at the Sheraton Denver Downtown Hotel. Now in its 11th year, Global’s marquee event is the largest fundraiser for Down syndrome in the world, and has now raised a cumulative $20 million.

At the beginning of the night, music icon and legend Quincy Jones, award-winning actors Jamie Foxx, Henry Winkler, Laura Linney, Eric Dane, and John C. McGinley, NFL Hall of Famer Terrell Davis, Colorado Rapids player Kellyn Acosta, R&B musicians Shamari and Ronnie DeVoe, Instagram influencer Mikaela Hoover, and Global Ambassador DeOndra Dixon hit the red carpet while highlighting the alarming disparity of federal Down syndrome research funding.

“The Be Beautiful Be Yourself Fashion Show is important for many reasons,” said Laura Linney. “Events like this call so much needed attention to the research and medical care needed for the Down syndrome community, and that’s why I’m here tonight to support this wonderful cause.”

Later in the evening, 2019 Global Ambassador Charlotte Fonfara-LaRose, Miss Colorado Monica Thompson, and Denver Broncos cheerleaders Jozie, McKenna, and Alexandria joined the line- up and rocked the runway, which featured 22 brilliant models who happen to have Down syndrome. Two models, Letizia Napoleone and Angelina Magdalene hailed all the way from England and India respectively.

Global was honored to have Quincy Jones in person to help present his namesake awards, the Quincy Jones Exceptional Advocacy Awards (Q-Award), to supermodel Amanda Booth and TV star and entrepreneur Megan Bomgaars. Booth, who is also a mother to Micah who happens to have Down syndrome, said “How fortunate am I to have been given such an incredible platform to have my thoughts be heard, and to have my work be validated and recognized. That’s really all I am hoping for, by showing up with my son and demanding that he be on the covers of magazines, and star in commercials. If Down syndrome is recognizable, then it will be familiar, and when something is familiar it is welcome.”

Bomgaars, upon receiving her award, shared an inspirational message, “Since my first Global fashion show, I have really grown as an advocate. I started to really understand that my voice, that our voice, had the power to change the world.”

“This year was a banner year for Global,” says Michelle Sie Whitten, President & CEO of the Global. “With support from our Congressional Champions and leadership at the National Institutes of Health (NIH), we have successfully advocated for a near-tripling of the federal government’s research budget benefitting people with Down syndrome. We are serving over 1,800 pediatric patients from 28 states and 10 countries, while also working on adult care. We are also proud that the film starring our Q-Award winner Zack Gottsagen, The Peanut Butter Falcon, which we executive produced, is now getting Oscar buzz!”

Dr. Joaquín Espinosa, Executive Director of the Crnic Institute for Down Syndrome on the Anschutz Medical Campus, was also effusive, “We are grateful for NIH’s support of our research, allowing us to understand trisomy 21 in much greater detail and to conduct clinical trials of potential treatments for comorbidities in Down syndrome. Global’s partnership and Michelle Sie Whitten’s leadership have been instrumental in securing funding for Down syndrome research that will undoubtedly lead to better health outcomes in people with trisomy 21.”

Another highlight of the evening was a surprise announcement made by Noreen Salah Burpee, Executive Director of the Salah Foundation, and delivered by 9News emcees Kim Christiansen and Tom Green. The Salah Foundation matched $75,000 during the live auction that will go to a much-needed Computer Training Class at Global’s new Education Center that was made possible by a transformative $1 million gift from Salah Foundation in 2017.

Global President and CEO Michelle Sie Whitten and her husband Tom Whitten proudly served as the 2019 Be Beautiful Be Yourself Fashion Show chairs. Past event chairs include Kacey Bingham and Brittany Bowlen, Peter Kudla, Anna and John J. Sie, Sharon Magness Blake and Ernie Blake, Ricki Rest, and Nancy Sevo. Other notables in attendance included past Global Ambassadors Chase Turner Perry, Sophia Kay Whitten, Louis Rotella IV, Markus Sikora, and Clarissa Capuano; and past Q-Award winner Tim Harris.

Proceeds from Global’s Be Beautiful Be Yourself Fashion Show help underwrite life-changing and life-saving research and medical care at Global’s affiliates – the Crnic Institute for Down Syndrome and Rocky Mountain Alzheimer’s Disease Center, both at the Anschutz Medical Campus, and the Sie Center for Down Syndrome at Children’s Hospital Colorado. The fashion show would not be possible without the generosity of Global’s Leadership circle, sponsors, Ambassadors, Q-Awardees, models, Down syndrome partner organizations, celebrities, self- advocates and families.

Missed the event? It’s not too late to get involved! See photos from the event and read all the top media coverage.

To learn more about the Be Beautiful Be Yourself Fashion Show or to donate, visit www.bebeautifulbeyourself.org

To learn more about the Global Down Syndrome Foundation, visit www.globaldownsyndrome.org

About Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of Research, Medical Care, Education, and Advocacy dedicated to significantly improving the lives of people with Down syndrome. Global supports the research of hundreds of scientists around the world through their advocates, partners and affiliates, including the Crnic Institute for Down Syndrome, the Rocky Mountain Alzheimer’s Disease Center, the Anna and John J. Sie Center for Down Syndrome, and a new pilot Adult Clinic. Global invites its supporters to celebrate over a decade of milestones in helping people with Down syndrome at their Be Beautiful Be Yourself Fashion Show. To learn more, please visit www.globaldownsyndrome.org and www.bebeautifulbeyourself.org.

Award-Winning Actor Colin Farrell Goes Above & Beyond for Global

November 3rd, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 3 of 4


Ensuring 2019 Global Ambassador Charlotte Fonfara-LaRose has a ball at the red carpet premiere of Dumbo


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

IN MARCH 2019,Charlotte Fonfara-LaRose attended the movie premiere of Tim Burton’s live-action remake of the Disney classic Dumbo as Colin Farrell’s guest. Farrell, who plays circus stalwart Holt Farrier in the film, says, “I was so happy to see Charlotte again at the premiere, and I hope to see her again soon!”

Charlotte assures us the feeling was mutual.

“I felt like a celebrity on the red carpet — he totally remembered who I was and gave me a hug!”

Other cast members in attendance included Michael Keaton, Danny DeVito, Eva Green, and Alan Arkin. As for hanging out with other celebrities on the red carpet like Helen Mirren, Charlotte exclaims, “It was so exciting!”

This amazing opportunity stemmed from Farrell’s generous live auction donation at the Global Down Syndrome Foundation’s 10th Anniversary Be Beautiful Be Yourself Fashion Show in 2018, where Charlotte was a model and Farrell was an awardee. This year, Charlotte has been chosen as the 2019 Global Ambassador where she and her family will be honored at Global’s marquee annual fundraiser.

MEET CHARLOTTE FONFARA-LAROSE

The 16-year-old firecracker was named after her maternal grandmother, Charlotte. Charlotte is a natural activist who loves to help people.

“I help anyone feeling sad feel better by giving them a hug,” she says.

Cathy Fonfara and Scott LaRose had Charlotte in 2003. The young new parents did not learn Charlotte would have Down syndrome until she was born, causing quite a shock. However, both Cathy and Scott come from large dedicated families, who rallied in support of their beautiful new addition to the family.

“Her birth made us want to be better people, and we wanted better for her,” says Cathy. “She is really the reason that we have such a great relationship and that we are a loving family together.”

Scott recalls that his father, who was an engineer and probably knew the least about Down syndrome in the whole group, came to them two days after Charlotte’s diagnosis with a binder of information.

“It was a very touching way to approach things, and I think it certainly helped us dig in a little bit,” Scott tells.

Sixteen years later, the family remains close. The Fonfara and LaRose families have a unique arrangement that works well for them and gives Charlotte lots of quality time with her large extended family.

“Scott and I are no longer a couple, but we are a family and we will always be a family,” says Cathy. “We vacation together, we go out to dinner as a family, and we spend every holiday together as a family.”

Charlotte lives full time with her mom and 8- year-old sister, Noelle, in Annapolis, Maryland. Scott is a ver y attentive father who is involved in every aspect of Charlotte’s life. Charlotte also has special relationships with both her grandmothers: Cathy’s mom, whom she calls “Oma,” and Scott’s mom, whom she calls “ Gigi.”

Charlotte is an inspiration to her family and a role model to her little sister, classmates, and peers. She doesn’t let Down syndrome get in the way of pursuing her dreams, and she lives her life as any typical 16-year-old. She loves horseback riding, swimming, paddleboarding, and traveling. In fact, she’s traveled to over 30 states and 10 countries with her family! She has a boyfriend named Zach, whom she has known since childhood, and they love going on sushi dates. Charlotte has dreams of owning a bagel shop one day, marrying Zach, and living in a blue and red home together.

Charlotte has inspired her mom into action.

“Over the years Charlotte has shown me that all she needs is what all children need: love, support, and encouragement,” says Cathy. “She also has helped me to educate doctors, teachers, and school administrators about the ability and potential of people with Down syndrome.”

GLOBAL’S 2019 AMBASSADOR

This year, Charlotte and her family are thrilled to be named an Ambassador family at the 2019 Be Beautiful Be Yourself Fashion Show. The event is the largest fundraiser for Down syndrome in the world. Over 1,400 self-advocates, families, Hollywood and sports celebrities, community philanthropists, and government leaders attend each year.

Charlotte and her family are no strangers the star-studded evening, though. Cathy and Charlotte were introduced to Global when Zach was in Global’s Washington, D.C. Gala in 2013. Charlotte and Zach danced on the runway together during a performance by Sheryl Crow!

“When we attended our first fashion show, we were astounded by the effort, quality, and attention that Global put into providing such a beautiful and festive event to showcase the beauty of individuals with Down syndrome,” says Cathy.

While she is always impressed by the famous and influential people who come out to support the show every year, Cathy is clear.

“The best part is when the models walk the runway, unintentionally stealing the spotlight from those celebrities escorting them,” she says. “The pride and joy on the models’ faces is indescribable and inspiration is palpable.”

Charlotte and her family have now attended seven Global fashion shows.

COLIN FARRELL’S SPONTANEOUS AND IMPROMPTU GENEROSITY

In 2018, at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show, guests went wild for the 25 models with Down syndrome, including Charlotte. They were also brought to their feet by two inspiring recipients of Global’s Quincy Jones Exceptional Advocacy Award — Zack Gottsagen and Colin Farrell.

Farrell is an award-winning Irish actor and activist. He received his first Golden Globe for In Bruges and was nominated for multiple awards for his performance in The Lobster, starring opposite Rachel Weisz. More recently he has star red in the Harry Potter spin-off prequel, Fantastic Beasts and Where to Find Them, The Killing of a Sacred Deer with Nicole Kidman, Roman J. Israel Esq. with Denzel Washington, and the Disney live-action film Dumbo directed by Tim Burton.

Farrell uses his public platform to support organizations he is passionate about. He serves a celebrity partner for the United Nations’ World Food Programme, was an official spokesperson for the Special Olympics World Games in Shanghai, and supports nonprofits focused on the differently-abled community in tribute to his son, James.

As a father to a son with Angelman syndrome, Farrell has supported the Foundation for Angelman Syndrome Therapeutics for over a decade. He credits his son with making his life more meaningful and fulfilling.

“James’ very existence has changed so much about my life and how I preserve my own life selfishly being a caretaker and having the gift of being a protector and a provider for James, and as someone who loves him endlessly, someone who has watched his growth from infant to child to teenager now and approaching his young manhood,” he says. “James’ strength and bravery, his individuality and yet his commonality are things I’m constantly struck by.

“And, of course, as a result of his existence, it has afforded me the great gift of being involved in the lives of other families who care for a child who is differently-abled,” Farrell continues. “I’ve been touched by and allowed to be close to families who share the struggles of just being a par ent first and foremost but also the extra struggles that can arise from being a parent of a child who is differently-abled. James’ enrichment of my life is beyond measure.”

Indeed, James and his work benefiting the differently-abled brought Farrell to Denver last year to receive Global’s highest honor. During the fashion show’s live auction, Farrell jumped up on stage alongside Jamie Foxx, Jeremy Renner, Von Miller, and John C. McGinley and spontaneously offered a trip to Hollywood and tickets to the premiere of Dumbo. Impressed and moved by Farrell’s generosity, Charlotte and her mom decided to bid on the tickets, and they won!

At the fashion show, Farrell took photos with Charlotte and all the models with Down syndrome, and spoke to reporters on the red carpet.

“Seeing all of the members of the community walking down the runway and seeing how much they were empowered, and how the models and every single person in the audience was enraptured, seeing this as an indelible moment and celebration of their lives, and their brilliance as human beings and spirits both individually and as a community, was extraordinarily enriching and also emboldening to observe,” Farrell says.

“What a class act to not only support Global with his presence at the gala but to also offer an ex citing item to raise more money,” says Cathy. “And then be so down to earth and caring to make my sweet Charlotte feel so special.”

FIGHTING DISCRIMINATION AND OVERCOMING CHALLENGES — A REWARDING LIFE

Thousands of guests travel from all over the world to see Global’s iconic fashion show, where models with Down syndrome rock the runway with their celebrity escorts. The evening gives attendees an opportunity to learn, network, and support Global’s work. Through ticket and table purchases, model sponsorships, silent and live auction bids, and general donations, the proceeds from Global’s Be Beautiful Be Yourself Fashion Show benefit their affiliates’ important work in research and medical care.

“The underlying theme of the fashion show is actually human and civil rights, and our event gets to flip an old, negative paradigm on its head,” says Michelle Sie Whitten, President and CEO of Global. “From very active members of the Global community to people who are completely new to Down syndrome, everyone leaves feeling they are a part of something bigger than themselves.”

Charlotte’s family agrees.

“We’ve faced some heartbreaking discrimination in the education system, with teachers creating restrictive learning environments and blatantly excluding kids with special needs,” says Cathy. “One of the many great things that Global does is helping every individual with Down syndrome with education from academia to life skills. They work with parents and their children on their IEPs (individualized education programs), and they are now developing an education center at their new headquarters to focus on vocational training.”

Global aims to show the world that people of all abilities , like Charlotte and James, should have the opportunity to reach their full potential and live happy, rewarding lives.

“Educating our medical professionals and our community is important,” says Farrell. “Imagine you are told your child may never walk and then you see your child take his or her first steps a couple of weeks short of their fourth birthday like James did. The profundity and the emotional magnitude are overwhelming and must be shared with others to educate how y our child’s future is communicated. So there will be great challenges with your child like any child, but the rewards can be unimaginable and even more magnified.”

WORKING HARD TO CREATE HEALTHY LIVES

Global’s Ambassadors and models help raise awareness and advocate for people with Down syndrome to have equal access to transformative research, lifesaving medical care and other opportunities. And who’s at the top of Global ’s contact list for this? The U.S. government. Down syndrome has been one of the least-funded genetic conditions by the National Institutes of Health (NIH) for nearly 20 years, despite being the leading cause of developmental delay in the U.S. and the world.

Angelman syndrome is also a genetic condition. Farrell says that although he was saddened to learn about this disparity in funding, he wasn’t surprised.

“I think maybe the reason for this is a bittersweet one,” Farrell says. “Because people with Down syndrome are often presented as loving and happy, members outside of the community may think there’s no help needed. And it’s our job to teach others that people with Down syndrome need specialized medical care and research and, frankly, help throughout their lives and raise awareness.”

Farrell is optimistic about the progress in research for various genetic conditions “It’s an exciting time in science, and the future is looking brighter for our children than ever before.”

Over a decade of Global lobbying Congress and collaborating with the NIH has resulted in a tripling of the NIH’s Down syndrome research budget, from $27 million in 2016 to $77 million in 2019.

“Through Global, we have come to understand that people with Down syndrome have a different disease profile and that they need specialized medical care throughout their lives,” says Scott. “I was shocked to learn that there are no updated, evidence-based medical care guidelines for adults with Down syndrome. We are hugely grateful to Global and the experts who are working to create those for Charlotte and our community.”

“Global’s amazing work in advocacy, medical care, research, and government legislation will help my daughter and others with Down syndrome be able to live the lives they want and the lives all parents wish for their children,” says Cathy.

“Global’s work is so important because they help find the best treatments for people with Down syndrome who are sick,” Charlotte adds.

The connections between Down syndrome and cancer research are particularly important to the family. In 2016, Charlotte’s friend Mary Miller was diagnosed with leukemia. Charlotte and Mary, both born with Down syndrome, have been friends since appearing as models in Global’s 2014 Be Beautiful Be Yourself Fashion Show. Motivated by Mary’s fight against leukemia and their desire to fund critical Down syndrome research, Cathy and Scott funded a Basic Science Grant to Joaquín Espinosa, Ph.D., and his team at the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus. Additionally, Charlotte’s grandmother Gigi has cancer, and as always, the family is supporting her every step of the way.

“Charlotte has a heart of gold and is already a champion for others who are sick or who she feels are disadvantaged in some way,” says Cathy. “She was just born that way, and we can’t wait to see what challenging projects and work she will take on going forward.”

“As a parent, Charlotte is my number one priority,” says Scott. “I want to make sure she receives everything she needs to reach her potential. By supporting Global, we have the luxury of not only helping Charlotte, but helping all people with Down syndrome and that’s an amazing feeling.”

Charlotte will be featured at Global’s Be Beautiful Be Yourself Fashion Show on Saturday, Nov. 2. Farrell encourages everyone to support her.

“I would recommend anyone who gets a chance to support Global and the Be Beautiful Be Yourself Fashion Show in Denver try and make the trip. Charlotte and everyone with Down syndrome deserve your attention. The event itself is love, community, harmony, unity, and unbridled hope for our future.”

“Whether she is being poked and prodded for medical tests, being underestimated by teachers at school, or having people staring at her as she walks down the street, Charlotte has always been brave, resolute, and true to herself. She is truly a great role model and Ambassador.”

Charlotte is excited to apply her strength and passion to her new role with Global.

“As Global’s Ambassador, I hope to help other people with Down syndrome be healthier through medical research, to bring attention to Global’s mission, and to bring respect to people with Down syndrome.”


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Global Webinar Series – Fall 2019 Recap

October 24th, 2019 by Global Down Syndrome Foundation

FALL 2019

What Families Need to Know: Utilizing the Pediatric Medical Care Guidelines for Down Syndrome


What You Need to Know


Overview & Speakers:

This webinar discusses the importance of utilizing the American Academy of Pediatrics Guidelines Health Supervision of patients with Down Syndrome, published in 2011. Find out what families need to know. Key takeaways from this presentation are:

To better comprehend the utilization of the Guidelines in medical care of our kids

To recognize the importance of ongoing thyroid, hearing and vision

To understand the increased risk of respiratory illnesses including pulmonary illnesses, pneumonia, and aspiration in individuals with Down Syndrome

Francis Hickey, MD

Francis Hickey, MD

Fran Hickey, MD joined the Linda Crnic Institute for Down Syndrome as Medical Director of its Anna and John J. Sie Center for Down Syndrome in 2010 and he has been involved in the care of individuals with Down syndrome for over 2 decades. Since 2010, Dr. Hickey has organized a multi-disciplinary team of experts interested in children with Down syndrome along with a dedicated research team. He has evaluated nearly 1800 unique individuals with Down Syndrome from across the country and internationally the past 9 years. Sie Center clinics developed include: General Clinics, Infant Clinic, Feeding Clinic, School Age Clinic, Prenatal Clinic, and 2 Sleep Clinics. His research has concentrated on clinical studies involving identification and interventions for comorbidities found in children with Down syndrome. Dr. Hickey has directed over 30 research projects. He has authored or co-authored 30 articles in scholarly publications on Down syndrome. Also, he has developed an academic teaching program on Down syndrome for residents, medical students and fellows who have rotated through the Sie Center clinic. The team developed an innovative Down Syndrome Guideline Chart 1-page summary chart of AAP Guidelines Health Supervision of Down Syndrome Patients. Dr. Hickey and his wife, Kris, are the parents of four children, one of whom has Down syndrome.


Key Takeaways:


Powerpoint Presentation: Click to Download


Additional Handout: Click to Download


Questions & Answers:

Laura, a member of the Down Syndrome Association of Central Texas:

1. Beyond giving copies to medical professionals and encouraging families to do so as well, do you have any suggestions for encouraging physicians to utilize the guidelines?

I would provide AAP Guidelines and guideline chart. I would emphasize the AAP has endorsed these guidelines to maximize the health of our children. Guidelines are clear for testing thyroid, hearing, ophtho, Cardiology, and sleep study Parents should be aware of guidelines.

2. Is there anyone besides parents/caregivers and physicians you recommend local Down syndrome associations provide these guidelines to? (e.g., ECI programs, private therapists, etc)?

I would offer appropriate sections of the guidelines to all providers. Excellent idea!

3. Is the AAP working on an update to these 2011 guidelines?

Yes, the AAP is reviewing the guidelines.

Jena, a member of the Down Syndrome Association of Greater Cincinnati

1. I present the guidelines to each family when I meet with them after birth. What should I be saying when I present them?

Congratulations on doing this. The family and the baby should be congratulated, and the family should be allowed time to adjust. I would explain these are long term health guidelines and allow the child to reach their health potential. Fairly easy to follow. A follow discussion may be beneficial with the family.

2. In the early days, parents often feel like everything is out of their control. I find that these guidelines help to give them some control over their child’s healthcare. Are there any other ideas to help give some control back to the parents during this time?

Always concentrate on child’s potential and their enjoyment of life. Meeting other families through DS parent groups allows better knowledge and control. I agree with offering the guidelines as control of their child’s healthcare. Great idea!

3. Who should the parents present these guidelines to other their pediatrician?

Subspecialist, EI team. Therapists.

Karen, a parent in Jacksonville, FL:

1. Have there been any changes to the recommendations for the AAI screenings in recent years?

Since 2011 AAP guidelines have not recommended routine screening for AAI

2. What recommendations do you have for sleep studies if your child is a teen?

No routine recommendation. Consider symptoms like snoring and daytime sleep as consideration of sleep study.

Karen, a parent in Winter Garden, FL:

1. Why if our children have high incidence of thyroid disease, they don’t get a complete thyroid panel? Instead, they just get a THS and T4.

Endocrine specialists recommend TSH and T4 for the assessment of thyroid function.

Michele, a relative in West End, NC:

1. As a grandparent of a 12-year-old with DS, how can we encourage the parents to seek specialized assessment when they have not since birth?

Emphasize the importance of the guidelines and that earlier screening will allow the best health outcome. Meet at DS clinic or DS parent groups.

Patti, a parent in Portage, MI:

1. How is eczema treated?

See PCP since treatment is not related to DS

2. Hypothyroid-what’s best treatment and why?

Treat with Synthroid to normalize thyroid labs

3. Please recommend activities to aid in continuous, lifelong cognitive learning.

This is not easy to summarize. However cognitive stimulation like academic/reading, social activities, physical activity, and appropriate recommendations from school, therapists and family members. It should be continued learning.

Tangi, a parent in Cranbury, NJ:

1. Do you recommend children with DS getting the HPV shot (aka Gardasil)?

Yes, all vaccines recommended by CDC, AAP

2. On an average, how many are able to read? My son is 12 and has little interest in reading.

All children with Down syndrome are individuals and reading is variable in our children. I would discuss with school specialists to address this issue and continually work on reading skills.

Laura, a parent in San Ramon, CA:

1. Is it imperative that the pediatrician have these guidelines? And how do we get them to them and assure they get trained and well-versed about my child with DS?

It is imperative for the health of your child. The guidelines are easy to implement especially with the chart.

2. What’s the best method of testing for Thyroid, hearing, and vision and how often should our children with DS be tested?

Booth hearing with audiology every 6 month until 3 yo then annually; T4, TSH every 6 months until 2 yo then annually; ophthalmology yearly but determined by MD

Chantel, a parent in St. Lucia:

1. What can be done to alleviate stuffiness when he has no cold?

Discuss with PCP, may need ENT referral

2. How can you detect a respiratory before it is too late?

Again, need close follow up with PCP

Carol, a medical professional in Littleton, CO:

1. When should my child be screened for AAI?

Please see below

Michelle, a parent in Barboursville, WV:

1. At what age should a child with DS be screened for Atlantoaxial Instability (AAI) and if it is negative should this ever be repeated later in life?

Since 2011, AAP guidelines have not recommended routine screening for AAI

2. I work at our local School of Medicine with Project DOCC, training residents and medical students about the delivery of Chronic Care. Where can I learn more about your training program for students who rotate through the Sie Center clinic?

Sie Center training includes following a child with Down syndrome through our clinic with medical provider, PT, Speech and Education specialist. After the clinic discussion includes training. Syllabus including Health Guidelines for Children with Down Syndrome 2011 is provided. https://pediatrics.aappublications.org/content/128/2/393.full

3. Statistically speaking, are there more adults living with DS now than children?

This would take statistic evaluation.

4. What is the current average lifespan for adults with DS?

Into their 60’s

Laura, a parent in San Ramon, CA:

1. My 14-year-old suffers with plaque psoriasis on his scalp, ears, scalp. What is it related to? Any natural solutions?

Psoriasis is rare and problematic, I would refer to PCP and Dermatologist if possible

Tara, a parent in Superior, CO:

1. Where can pediatricians get the 2011 Guidelines, if they don’t already have them?

Health Guidelines for Children with Down Syndrome 2011: https://pediatrics.aappublications.org/content/128/2/393.full

Kristen, a parent in Lakewood, CO:

1. What are your thoughts on developmental/behavioral optometry or neuro optometry for kids who pass the vision screening, but still show vision challenges in daily life i.e. convergence? As far as I know, there isn’t science to back up these therapies and we had 2 visits with a developmental/behavioral therapist (optometrist), but it was kinda ridiculous. Is there any validity to this therapy? Are neuro optometrists a better way to go?

I discussed this issue with our Pediatric Ophthalmologist and they do not recommend this therapy.

Jeanne, a grandparent in Littleton, CO:

1. Any information on the NECK growth and any NECK problems on children ages 3-5 years old?

I think this is related to AAI cervical issue, see above.


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Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.

Shia LaBeouf Wants You at the Be Beautiful Be Yourself Fashion Show

October 23rd, 2019 by Global Down Syndrome Foundation

Shia LaBeouf has a message for YOU! Shia’s breakout film, The Peanut Butter Falcon, co-starring Global’s Quincy Jones Exceptional Advocacy Award winner, Zack Gottsagen, is now the most successful indie film of the year! Last year at Global’s Be Beautiful Be Yourself Fashion Show, co-stars Shia and Dakota Johnson danced on stage with Zack as he accepted his award with celebratory roars from Armory Films producers and writers/directors Tyler and Michael below in the audience.

Zack and his crew had planned to attend this year but we are thrilled to announce they cannot – BECAUSE (wait for it) – Zack’s performance in The Peanut Butter Falcon has earned Oscar buzz and the entire crew needs to be in LA so that Zack can be the FIRST (but not last) actor with Down syndrome to be nominated for an Academy Award!

Global is a proud executive producer of the film, and wants more actors with Down syndrome in Hollywood! Please join us in our fight for health and research equity for people with Down syndrome at the LARGEST fundraiser for Down syndrome in the world! Learn more here: www.bebeautifulbeyourself.org

To learn more about Peanut Butter Falcon click here.