Archive for 2019

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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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.


Celebrities vow to raise awareness and funds for life-saving and transformative medical care & research at Global’s Be Beautiful Be Yourself Fashion Show

Top Row (L-R): Quincy Jones, Henry Winkler, Laura Linney, Terrell Davis, Charlotte Fonfarra-LaRose; Bottom Row (L-R): Eric Dane, Shamari and Ronnie Devoe, John C. McGinley, Amanda Booth, Megan Bomgaars

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

Denver, CO (October 22, 2019) – Today the Global Down Syndrome Foundation (Global) announced Emmy Award-winning actor, producer, and director Henry Winkler; Academy Award-nominated and award-winning television and film actress Laura Linney; NFL Hall of Famer Terrell Davis, and R&B royalty and husband-wife dream team Shamari and Ronnie DeVoe will join its celebrity lineup for the 11th annual Be Beautiful Be Yourself Fashion Show at the Sheraton Denver Downtown Hotel, 1550 Court Place, on Saturday, November 2. The marquee event is the largest Down syndrome fundraiser in the world.

Winkler, Linney, Davis, and the DeVoes will join Global in honoring their 2019 Quincy Jones Exceptional Advocacy Award (Q-Award) winners and stars, Amanda Booth and Megan Bomgaars. Both women are passionate advocates for the differently-abled community, and Megan herself has Down syndrome.

Other confirmed celebrities for the Be Beautiful Be Yourself Fashion Show include: music legend and inspiration behind the Q-Award, Quincy Jones; Global board member and award-winning actor John C. McGinley; award-winning actor Eric Dane; Q-Award winner DeOndra Dixon; U.S. Squad World Cup team member and Colorado Rapids player Kellyn Acosta; supermodel and Instagram influencer Mikaela Hoover; 2019 Miss Colorado Monica Thompson; and Denver Broncos cheerleaders Jozie, McKenna, and more.

Twenty-three models with Down syndrome from around the world, traveling from as far as India and London, will rock the runway with celebrity escorts. At the event, Global will also honor the 2019 Be Beautiful Be Yourself Ambassador Charlotte Fonfara-LaRose, while celebrating the return of past Ambassadors and Q-Award winners: DeOndra Dixon and Clarissa Capuano.

For over a decade Global has funded transformative and life-saving research and medical care through its affiliates – the Linda Crnic Institute for Down Syndrome and the Rocky Mountain Alzheimer’s Disease Center both at University of Colorado Anschutz Medical Campus, and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

Since Down syndrome is one of the least funded genetic conditions by the National Institutes of Health (NIH), Global depends on fundraising events to underwrite important work. This work includes Global’s lobbying Congress and outreach to NIH which has resulted in nearly a tripling of the NIH Down syndrome research budget – from $27 million in 2016 to $77 million in 2019.

“We are excited to share that Global’s unabating and difficult work in Washington, D.C. continues to succeed with the promise of elongating life and dramatically improving health outcomes for people with Down syndrome,” says Global President and CEO, Michelle Sie Whitten. “This wouldn’t be possible without the funds raised at the Be Beautiful Be Yourself Fashion Show and the support of our amazing donors, dedicated Congressional and NIH Champions, passionate self-advocate and families, and our brilliant researchers and medical professionals.”

Various levels of Be Beautiful Be Yourself Fashion Show tickets, table sponsorships, and model sponsorships are available, including VIP levels at www.bebeautifulbeyourself.org.

About Global Down Syndrome Foundation

Established in 2009, Global Down Syndrome Foundation (Global) is a non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Global is part of a network of affiliates who work together to deliver on our mission, supporting hundreds of scientists and medical care professionals. Our affiliates include the Sie Center for Down Syndrome, the Crnic Institute for Down Syndrome, Rocky Mountain Alzheimer’s Disease Center and a new pilot Adult Clinic. For more information, visit globaldownsyndrome.org and follow us on social media (Facebook, Twitter @GDSFoundation, Instagram @globaldownsyndrome).

Global Down Syndrome Foundation and Local Down Syndrome Affiliates Help Ensure A Big Opening Weekend Triggering 1,000 Screen Expansion

Global Celeb Lineup Amanda Booth, Charlotte Fonfara-LaRose, Mikaela Hoover, Megan Bomgaars

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

Denver, CO (September 18, 2019) – Today, the Global Down Syndrome Foundation (“Global”) announced supermodel and actress Amanda Booth and TV star and entrepreneur Megan Bomgaars will receive Global’s Quincy Jones Exceptional Advocacy Award (“Q Award”), as well as its initial celebrity lineup for the Be Beautiful Be Yourself Fashion Show. The marquee event is the largest Down syndrome fundraiser in the world, raising over $18 million for life-saving and life-changing research and medical care to date. An estimated fourteen hundred attendees including models with Down syndrome, Hollywood and sports celebrities, philanthropists, and government officials will head to the Sheraton Denver Downtown Hotel, 1550 Court Place in Denver on Saturday, November 2.

Booth has worked on fashion editorials and advertising campaigns for Harper’s Bazaar US and Australia, Glamour Magazine UK, Elle, Anthropologie and more. Booth uses her fashion platform in top publications and on social media to support Global’s important work and to share her journey of parenting a beautiful son who happens to have Down syndrome. Recently, Booth and her son appeared on the cover of Vogue Living Netherlands, making Micah the first person with Down syndrome to be featured on a Vogue magazine cover.

Bomgaars, a woman with Down syndrome herself, regularly represents Global at conferences and events, including this year’s Trisomy 21 Research Society International Conference in Barcelona, Spain and the National Down Syndrome Congress Annual Convention in Pittsburgh, Pennsylvania. An inspiration to everyone to follow their dreams, the 26-year-old has starred in the four-time Emmy Award-winning television series Born this Way, was selected by the White House to attend former first lady Michelle Obama’s Beating the Odds summit, and has developed a clothing line and a makeup line with Sanrio’s “Hello Kitty” and ArtPop Cosmetics respectively.

Other confirmed celebrities for the Be Beautiful Be Yourself Fashion Show include: Music Legend and inspiration behind the Q Award, Quincy Jones, Global board member and award-winning actor John C. McGinley, award-winning actor Eric Dane, supermodel and Instagram influencer Mikaela Hoover and award-winning actor from the breakout indie film The Peanut Butter Falcon, Zack Gottsagen. A full roster of celebrities will be announced in the coming weeks.

During the fashion show, 23 brilliant and beautiful models with Down syndrome will rock the runway. The event will also honor the 2019 Global Ambassador Charlotte Fonfara-LaRose, while celebrating the return of past Ambassadors and Q-Award winners: DeOndra Dixon, Zack Gottsagen, and Clarissa Capuano.

“We are proud of our accomplishments and we are deeply grateful for the support we receive from our amazing families, congressional champions, the National Institutes of Health, and professionals who empower us to save and transform the lives of people with Down syndrome every day,” said Michelle Sie Whitten, President, CEO and Co-Founder of the Global Down Syndrome Foundation. “The proceeds from this spectacular event help fund over 200 scientists working on elongating life, and a dream team of medical professionals providing excellent medical care to over 1,700 patients from 28 states and 10 countries.”

Global’s advocacy and lobbying efforts with Congress and outreach to the National Institutes of Health (NIH) have resulted in an unprecedented increase of the Down syndrome research budget, from $27 million in 2016 to an estimated $77 million in 2019.

About Global Down Syndrome Foundation

Established in 2009, Global Down Syndrome Foundation (Global) is a non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy. Global is part of a network of affiliates who work together to deliver on our mission, supporting hundreds of scientists and medical care professionals. Our affiliates include the Sie Center for Down Syndrome, the Crnic Institute for Down Syndrome, Rocky Mountain Alzheimer’s Disease Center and a new pilot Adult Clinic. For more information, visit globaldownsyndrome.org and follow us on social media (Facebook, Twitter @GDSFoundation, Instagram @globaldownsyndrome).

As the nation celebrates Down Syndrome Awareness Month, the Global Down Syndrome Foundation recognizes and thanks our friends and partners in Congress, the President and the White House, and the National Institutes of Health (NIH) for making Down syndrome a national research priority by significantly increasing research funding for FY2019 federal budget and going forward.

We are grateful to our congressional leaders who have championed Down syndrome research, which is one of the least funded genetic conditions at the NIH. The efforts of House and Senate Appropriations Labor-Health and Human Services Chairwoman Rosa DeLauro (D-CT), Ranking Member Tom Cole (R-OK), Chairman Roy Blunt (R-MO) and Ranking Member Patty Murray (D-WA) will improve the health and well-being of every person with Down syndrome as well as typical Americans living with and at risk for other diseases and genetic conditions, such as Alzheimer’s disease, cancer, and autoimmune disorders.

Further, by holding the first ever congressional hearing on Down syndrome research, that included the moving testimony of Representatives Cheri Bustos (D-IL) and Cathy McMorris Rodgers (R-WA), the American people gained a greater understanding of how harnessing the full power of the NIH and the national biomedical research enterprise will directly lead to improved treatments and eventually cures for these diseases that effect a majority of Americans. Global is honored and deeply grateful to you many other representatives including: Jaime Herrera Beutler (R-WA), Pete Stauber (R-MN), Lucille Roybal-Allard (D-CA), Barbara Lee (D-CA), Mark Pocan (D-WI), Katherine Clark (D-MA), Lois Frankel (D-FL), Andy Harris (R-MD), John Moolenaar (R-MI) and Tom Graves (R-GA) for championing Down Syndrome Research at NIH.

In his recent statement recognizing Down Syndrome Awareness Month, President Donald J. Trump spoke about the importance of “an inclusive Nation, one where Americans with Down syndrome are embraced in schools, workplaces, and communities—one where discrimination can no longer cast a shadow of inequality.” We thank the Administration for affirming its commitment to Down syndrome research and for joining us in celebrating the lives of those with Down syndrome.

Global Down Syndrome Foundation is an inclusive organization. We encourage and appreciate people from all walks of life to support children and adults with Down syndrome.

Understanding Behavioral Challenges

September 19th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 2 of 4


An important study in the journal of mental health research in intellectual disabilities shows that children with Down syndrome demonstrate increased behavioral issues compared with their typical peers. Early intervention and a development strategy can help.


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!

A STUDY CONDUCTED by doctors at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, an affiliate of the Global Down S yndrome Foundation, found that 94% of children with Down syndrome experienced one or more behavioral challenges on a w eekly or even daily basis. These behaviors include wandering off, refusal to follow instructions, aggression, impulsivity, and difficulty transitioning from activity to activity. Behavioral challenges can not only impact a child’ s quality of life but also cause major str esses for parents, teachers, and other caregivers.

In the study, Lina Patel, Psy.D., and her three co-authors, Kristine Wolter-Warmerdam, Noel Leifer, and Francis Hickey, M.D., analyzed current tools for measuring behavior in children with Down syndrome to determine which methods were effective and which could be improved upon. They also surveyed parents to learn about which behaviors were the most common and if any challenges shared a common denominator. The doctors published their results in late 2018.

Children with Down syndrome have many positive behavioral traits, and typical children certainly have negative behavioral issues. However, because of lack of research, behavior issues in children with Down syndrome are less understood. Behavioral challenges can hamper a child’s ability to function independently, perform well in school or other social settings, and even handle everyday tasks, such as bathing and dressing, at home. By understanding what can trigger certain behavioral issues, parents and teachers can better develop strategies to intervene before issues progress.

COMMUNICATION TOOLS: A COMMON DENOMINATOR

A variety of factors may fuel undesirable behaviors, according to Dr. Patel, lead author and D irector of Psychology at the Sie Center.

“I feel like motivation is a key factor,” Dr. Patel says. “It doesn’t mean that children with Down syndrome are unmotivated. It might just mean they are motivated by their own interests versus the task at hand, which then may result in behavioral challenges.”

Dr. Patel and her co-authors wanted to know which behaviors parents of children with Down syndrome found most concerning. They asked parents of 274 children seen at the Sie Center from 2010 to 2015 to fill out a specially designed questionnaire. On the questionnaire, parents were asked to state the frequency with which 16 behavior challenges occurred and their level of concern about each. Parents could also name additional behavioral challenges not listed on the form. The study is one of the largest of its kind and the results were not completely anticipated.

Noncompliance, wandering, sitting down and refusing to move, and aggression were the most common difficult behaviors parents reported. The amount and frequency of challenging behaviors was much higher than previously reported in scientific literature, with nearly 100% of parents noting the existence of challenging behaviors at least weekly.

“The most striking result we found was the frequency of behavioral challenges,” Dr. Patel says. “I think we did capture a wider array of behaviors, resulting in a higher percentage of children experiencing those behaviors. The good news is that many of the behavioral challenges that we assessed can be addressed using behavioral strategies that are informed by neurodevelopment.”

Neurodevelopment is the brain’s development of neurological pathways that influence areas including memory, intellectual functioning, attention, and focus.

The researchers also wanted to determine if any of these behavioral challenges shared a common denominator. They found that the inability of a child to effectively communicate his or her wants and needs was associated with many behavioral challenges.

“Behavior is a form of communication people use when they do not have access to other methods of communication, like verbal communication,” Dr. Patel explains. “Therefore, it’s not surprising that individuals with Down syndrome would have more behavioral challenges if they do not have more functional communication strategies.”

TAKE ACTION EARLY

The longer parents allow unwanted behaviors to persist, the more ingrained these behaviors may become.

“Behavioral interventions can make a difference and really change behavior,” says Elise Sannar, M.D., Assistant Professor of Child and Adolescent Psychiatry at Children’s Hospital Colorado. “If [parents] just live with [a behavior], it’s definitely not going to get better. If kids with Down syndrome learn that if they have a tantrum or refuse to move, they’ll get what they want, that will be reinforced, and they’ll continue to engage in that behavior.”

When concerning behaviors arise, parents should notify their child’s pediatrician or primary care physician as soon as possible so medical causes can be ruled out. Many behavior issues can be triggered by medical ailments to which children with Down syndrome are more predisposed. One such medical ailment is obstructive sleep apnea, which is found in up to 70% of children with Down syndrome.

In addition, parents should pay attention to the context of behavioral challenges — when, where, and with whom they occur, and what happens before and after them, says Anna Esbensen, Ph.D., Associate Professor, Research Director at the Jane and Richard Thomas Center for Down Syndrome in the Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center.

These clues can provide important information about why behaviors occur. Parents who are concerned about a behavior that happened when they weren’t around can ask their child’s friends, teacher, or employer for information about what took place.

“Teaching the child a replacement behavior or a different way of achieving or communicating their needs are helpful ways of teaching an adaptive … method of achieving their desired function,” Dr. Esbensen explains.

She continues, “Once we understand the function of the child’s behaviors, there are evidence-based strategies that can be used to modify that behavioral challenge.”

According to Dr. Sannar, one such strategy is applied behavior analysis (ABA), which uses a variety of techniques, such as positive reinforcement, to increase helpful behaviors and decrease damaging ones. ABA can be effective in children with Down syndrome, autism, and other conditions associated with behavioral challenges.

For example, Dr. Patel says, ABA can be used to stop a child with Down syndrome from running or wandering away from caregivers, also called elopement. A behavioral analyst can collect data to better understand why the child is eloping — is he or she bored, trying to avoid a difficult task that is hard, or eager for attention? Once the analyst has an answer, he or she can create a plan to address it. For example, if the child is avoiding work that feels too hard, the analyst can slowly increase a task’s difficulty or teach the child to ask for a break.

Helping people with Down syndrome manage behaviors is important, not only for their success in school and social situations but also as they enter adulthood, says Dr. Patel.

“Many individuals with Down syndrome who have the skill to seek employment may not be able to if they have behaviors that interfere with their job,” she advises. “It may be more difficult to gain independence with things like staying home alone or even living with others if these behaviors are not addressed.”

While it is more difficult to change longingrained behaviors, therapies and strategies exist that help adults, and studies are starting to address this older population.

The researchers plan to develop a more comprehensive tool to capture the full range of behavioral health challenges that children
with Down syndrome experience. They hope such a tool would help pediatricians and other community providers determine when to refer children to a behavioral health specialist. Most importantly, by understanding and analyzing. these behaviors, they hope to empower both individuals with Down syndrome and their parents to take necessary actions to improve and maintain appropriate behaviors.


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An Out-Of-Sight Connection

September 12th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM 2019 Issue 2 of 4


Last year, the Global Down Syndrome Foundation’s 10th Anniversary Be Beautiful Be Yourself Fashion Show brought together two very different football fans: Denver Broncos Lineback Von Miller and one of his biggest Admirers, sports-loving 14-year-old Daniel Walshe. The two connected over their love of the game – and fashionable eyewear.


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!

FOR MODELS AND ATTENDEES ALIKE, Global’s annual Be Beautiful Be Yourself Fashion Show is an unforgettable, magical experience. For Global participant Daniel Walshe, the fashion show was a chance to meet one of his longtime heroes, Super Bowl 50 MVP Von Miller. In 2011, Von was drafted by the Broncos as the No. 2 overall draft pick from Texas A&M University. Since then, the seventime Pro Bowl linebacker has posted the most sacks in the NFL. Daniel, a Broncos superfan, owns a Von Miller jersey and even rocks thick black-rimmed glasses because they look like Von’s trademark frames. Von was standing in front of the ballroom entrance when Daniel saw him, and Von greeted him with a big bear hug.

“Von was nice and friendly!” Daniel remembers..

“Both of them looked like they were having such a good time,” says Elaine Walshe, Daniel’s mom. “In fact, Daniel was so excited that a couple weeks later, he convinced us to take him to his first Broncos game to see his new friend in action.”

“I heard great things about Global’s fashion show from some of my current and former teammates that participated, like Peyton Manning and Brandon McManus,” Von says. “I went in not really knowing what to expect but wanted to go and show support for the event. I left being totally impacted by the type of community surrounding Global and the things they do. It was definitely lifechanging for me.”

TACKLING ADVERSITY & CREATING CHANGE

Being the successful athlete and force of nature on the football field that he is, it’s difficult to imagine a guy like Von Miller feeling self-conscious. But when he was a skinny, glasses-wearing fifth grader in Texas, Von didn’t feel destined for a career in professional football. In fact, at first, he had to beg his father to allow him to join a youth football team at the time because his father didn ’t believe he was ready to play. When Von finally began playing, he remembers enduring taunts from other children about his sports glasses.

“I started wearing glasses in second grade,” Von tells. “At first, I’m not going to lie, it was horrible. It wasn’t cool. When I found out I had to wear glasses, I was sad and depressed about it, but over time, I just grew into them, and they became ‘me.’ That’s how I can relate with so many kids who have glasses.”

After establishing himself as a successful professional football player in the NFL, Von was able to turn his childhood insecurities and fears into a way of inspiring children and boosting their confidence.

In 2012, he established Von’s Vision, a philanthropic organization that provides free eye exams and glasses to low-income children in the Denver area. To date, the organization has raised $5.1 million and provided over 8,500 Denver students with free eye care services. Throughout the year, Von’s Vision also funds portable optical exam centers so children in the community can get the eye exams they need.

Von was awarded the 2017 Broncos’ Community Impact Award for his charitable influence. Every spring, the team rallies in support of Von and hosts Von’s Vision Day Celebration at Broncos Stadium at Mile High. Children from identified schools and community organizations are invited to receive free eye screenings and exams. Additionally, participants are given the chance to meet Von.

“There are so many wonderful things we’ve done with the organization,” Von says proudly. “When we created Von’s Vision, I was happy to help one or two kids. To help so many kids and raise so much money for glasses is amazing. I have a wonderful team behind me that has blessed me and allowed me to impact so many lives.”

Up to 50% of people with Down syndrome will need glasses. The most common vision problems include farsightedness, nearsightedness, strabismus (crossed eyes), and astigmatism (blurred vision). Daniel started wearing glasses in kindergarten to address his farsightedness and astigmatism.

Von’s philanthropy work with eyesight and vision issues are very important and relevant to the Down syndrome community, and he understands exactly why.

“For some people with Down syndrome, it’s not that they can’t read, they just can’t see,” Von says. “They have a hard time being able to see words on a paper. That’s my life right there. I’ve always had problems with vision. I know what it feels like to have corrective vision, and I know what type of impact that can have on your life.”

Daniel is a big admirer of Von’s distinctive eyewear.

“When we went shopping for a pair of glasses a couple of years ago, Daniel was thrilled to find a pair of iconic thick black-rimmed glasses that looked like ones he’d seen on Von,” Elaine says.

Thanks to role models like Von, Daniel lets nothing stand in his way. He has faced several health problems, including chronic sinus and thyroid issues and sleep apnea, to which individuals with Down syndrome are predisposed. Daniel has benefited from medical care at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado, a Global affiliate, and knows how to have an active and healthy lifestyle. Daniel continues to pursue activities he loves, including swimming on a local rec team and playing Ultimate Frisbee and basketball on his middle-school team.

ADVOCATES FOR GLOBAL

The Walshe family became part of the Global family in 2010. Daniel met the Global staff and many new friends through medical visits and various Global events and programs.

“Global has been a tremendous support to Daniel, both socially and medically,” says Elaine. “The amount of Down syndrome resources they provide and access to specialists is incredible.”

“When we had Daniel, we were piecemealing together what medical areas were important and which doctors we should go see, just within different moms’ groups,” Elaine continues.

She adds, “Now you can go to the Sie C enter, and they will assess y our child and say, ‘Go see this specialist and that ther apist, and here’s what you need to do.’ It’s a one-stop shop, and they schedule the appointments for us. It’s been a life-changer.”

With access to great health care, Daniel has been able to participate in a variety of
Global’s Dare to Play programs, improving on his skills in soccer, football, dance, tennis, and more.

“It’s been an opportunity to meet other kids who have Down syndrome who have similar
interests,” Elaine says. “Without those programs, he probably wouldn’t have met all the wonderful friends he has.”

Daniel was also a model in Global’s 2014 Be Beautiful Be Yourself Fashion Show,
and the family continues to at tend the event every year. At the 2018 Be Beautiful Be Yourself Fashion Show, Daniel got to witness one of his heroes, Von, escort Global Ambassador DeOndra Dixon, down the runway. With encouragement from Oscar-winner Jamie Foxx, Von even put his gold suit with a blue floral pattern up for live auction. To the audience’s delight, then-Broncos quarterback Case Keenum purchased the jacket. The funds will underwrite important research and medical care for people with Down syndrome.

LOOKING FORWARD TO WHAT’S NEXT

A successful soon-to-be eighth grader who loves football stats and U.S. presidential history, Daniel is already thinking about starting high school. His parents anticipate he will go to college, enter the workforce, and enjoy an independent adult life. And Daniel has an even bigger goal — he wants to become a police officer.

“People with Down syndrome can do pretty much what they have the opportunity to do,” Elaine says.

As for Von, he is full of optimism as he prepares for his ninth NFL season
with the Broncos and a new head coach. He may be focused on the future, but he still reflects fondly on the Be Beautiful Be Yourself Fashion Show, where his life became a little richer.

“There is just so much love [from people with Down syndrome],” Von says. “I gave so many hugs that night. I walk into our facility every day with my teammates, and don’t even hug those guys, but every single person [at the fashion show] gave so much love. It was amazing.”


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!