Archive for 2018

A Peanut Butter Falcon Takes Flight

December 21st, 2018 by Global Down Syndrome Foundation

From Down Syndrome World Issue 3 2018

ZACHARY “ZACK” GOTTSAGEN, an accomplished stage performer and film actor who happens to have Down syndrome, was working on set for a movie in Los Angeles courtesy of the amazing nonprofit, Zeno Mountain Farm, when he met directors Tyler Nilson and Michael Schwartz. They were so taken with Zack’s intelligence, humor, enthusiasm, and joy for life that they decided to write a film for him to star in. The result, The Peanut Butter Falcon, incorporates Zack’s infectious personality and his love for wrestling into their lead character, also named Zak. The two relatively new directors gained the support of big-name actors including Shia LaBeouf, Dakota Johnson, and Thomas Haden Church.

Nilson and Schwartz hope The Peanut Butter Falcon, their first feature-length movie, gives people who are differently-abled a taste of the freedom they can enjoy when they follow their dreams.

A modern-day spin on Huckleberry Finn, The Peanut Butter Falcon follows Zak, a 22-year-old man with Down syndrome, who escapes the nursing home where he lives to pursue his ambition of professional wrestling. The budding wrestler hopes to meet retired wrestling legend “The Salt Water Redneck,” played by Thomas Haden Church, who lives in rural North Carolina. On his journey, Zak meets a crab fisherman and small-time outlaw named Tyler (played by LaBeouf), who becomes Zak’s ally.

Lucky Treehouse, one of the film’s production companies, describes the pair’s adventure: “Together they wind through deltas, elude capture, drink whiskey, find God, [and] catch fish.” Tyler and Zak are eventually joined by Eleanor (played by Johnson), an employee from Zak’s nursing home who is searching for him as well as answers of her own.

“Many people struggle to maintain a regular life, not because of their disabilities, but because of others’ disbelief in their talents … I am making [this film] for the people who believe it is OK to dismiss them,” Nilson writes on Lucky Treehouse’s production website.

AN A-LIST CAST Gottsagen was excited to work alongside the Hollywood A-list actors. LaBeouf is known for roles in movies such as Transformers, Holes, and Borg vs McEnroe. Johnson is known for films including How to be Single and for starring in the Fifty Shades of Grey franchise. Church has acted in TV shows and movies since 1980 and most recently played the lead in the HBO series Divorce.

Bruce Dern, a two-time Oscar nominee, plays Carl, Zak’s roommate at the nursing home. Producers for the movie include Ron Yerxa and Albert Berger, the talent behind Cold Mountain and Little Miss Sunshine. T Bone Burnett, the creative genius behind numerous award-winning film scores, produced the soundtrack.

In addition to Lucky Treehouse, the film was produced by Armory Films, Nut Bucket Films, and Tvacom Film and TV.

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!

THE MAKING OF A FALCON Despite its impressive cast and crew, The Peanut Butter Falcon’s true star is Gottsagen, 33, who credits his first acting role as the star of a natural childbirth instructional video on April 22, 1985. He was the first student to be fully included in a Palm Beach County public school, and in 2004, he earned a theater degree from the A.W. Dreyfoos School of the Arts in West Palm Beach. Currently, Gottsagen lives independently in Boynton Beach, Florida, and works at a local movie theater.

For more than 10 years, Gottsagen worked with Zeno Mountain Farm, a nonprofit that hosts camps for people of all abilities in Vermont, California, and Florida. He worked with the nonprofit’s Film Camp and appeared in movies such as Burning Like a Fire and Life of a Dollar Bill. While filming a western called Bulletproof, he got involved with a documentary titled Becoming Bulletproof, which followed the movie’s actors and probed the question of why more actors who are differently-abled don’t appear in films. The movie was nominated at numerous film festivals and won the Best Film, Audience Choice, Festival Prize, Grand Jury, and Best Documentary awards at the Cleveland International Film Festival, Heartland Film Festival, Massachusetts International Film Festival, New Hampshire Film Festival, and the Vail Film Festival respectively. It was screened at the Smithsonian Museum’s 25th anniversary of the Americans with Disabilities Act in July 2015 — Gottsagen was the keynote speaker at the event.

But it gets even better. In a March 2018 Esquire cover story interview, LaBeouf gave Gottsagen some serious credit for sobering up. In the cover story, LeBeouf not only alludes to Gottsagen’s acting chops, he states, “That mother#>@%&* is magical.”

For Gottsagen, he is centered knowing he has an extended family of actors and film crews. He appreciates the opportunity to live out his dream of being an actor and has already started on two additional productions.

“I hope that thousands of fans see [The Peanut Butter Falcon],” Gottsagen told the Palm Beach Post. “I hope that they will love it, and the cast, a lot, including myself.”

In May, the Global Down Syndrome Foundation hosted a special screening of The Peanut Butter Falcon at the Sie FilmCenter in Denver. It was attended by a focus group of local self-advocates and families, as well as Gottsagen and his mother, Shelley, who flew in from Florida.

Shelley is an extremely articulate but quiet woman who clearly has a remarkable relationship with her son. While she is awed by how outgoing her son is, she is not surprised at his career choice.

“Zack told me when he was 3 years old, and every year after that, he was going to be an actor,” she told the audience. “I am definitely proud at what he has accomplished.”

Gottsagen, music and film producer Berger, and director Schwartz did a Q&A after the screening, and the audience left inspired and thoroughly entertained. The film is currently in post-production and will be released later this year.

Gottsagen’s talent and his many accomplishments have earned him Global’s 2018 Quincy Jones Exceptional Advocacy Award along with award-winning Irish actor, Colin Farrell. The award will be presented at Global’s 10th Anniversary Be Beautiful Be Yourself Fashion Show, scheduled for Saturday, Oct. 20, in Denver.

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December 2018 Newsletter

December 17th, 2018 by Global Down Syndrome Foundation

December Brings Joy to Global!

Global Webinar Series – Winter 2018 Recap

December 14th, 2018 by Global Down Syndrome Foundation


Physical Therapy for Children with Down syndrome & How to Set your Child Up for Successful Learning Experiences

What You Need to Know

Overview & Speakers:

This webinar reviews physical therapy for children with Down syndrome and how to set up your child for successful learning experiences. Key takeaways from this presentation are:

  • Goal of physical therapy
  • Physical factors that impact the development of gross motor skills
  • Compensations for these factors
  • Crucial Components to develop when learning gross motor skills
  • Examples of how physical therapy addresses learning gross motor skills to help develop the crucial components
Pat Winders, PT

Pat Winders, PT

Patricia Winders, PT is the Director of Therapies and Senior Physical Therapist at the Anna & John J. Sie Center for Down Syndrome at Children’s Hospital Colorado. Prior to this position, she worked at the Kennedy Krieger Institute Down Syndrome Clinic in Baltimore, Maryland (from 1989-2007). Since 1981, she has specialized in providing physical therapy services to children with Down Syndrome. She is author of the book Gross Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals (Second Edition), published by Woodbine House (2014). She is a member of the Down Syndrome Medical Interest Group (DSMIG-USA) and also serves on the Professional Advisory Committee of the National Down Syndrome Congress (NDSC).


Powerpoint Presentation: Click to Download

Stage 1-5 Handout: Click to Download

Questions & Answers:

Ashley, a parent in Pike Road, AL:

1. My son is 16 months old. He is sitting (does not get himself into sitting) and attempting to army crawl. He is still not bearing weight on his legs and does not plant his feet when held upright. What can I do to encourage him to plant his feet? Would orthotics help him?

I hope listening to the webinar (handout slides beginning with #26) helped you with this question. You and his PT need to figure out why your son is not bearing weight—is it due to weakness, or does he feel unstable (due to ligamentous laxity), or does he resist it (behaviorally) because he would rather be sitting (or doing another gross motor skill)? When you know why he is not bearing weight, then you can figure out the best strategies to help him tolerate practicing this new skill.

To help him tolerate taking weight on his legs, you can practice 90/90 sitting on a 5-6” high bench (Stage 3) and supported kneeling. You can also practice slide 27 (moving from 90/90 sitting to standing and lowering to sitting) either with a bench or with your child on your thigh.

It is hard to say if orthotics would help him at this early time without seeing his foot posture and degree of ligamentous laxity. It is best to discuss this with his PT.


Melinda, a medical professional in Highlands Ranch, CO:

1. What do you feel is the role of a school based physical therapist for a child with a diagnosis of Down syndrome in the preschool setting?

PTs in that setting have their guidelines for providing services. In general, I would recommend evaluating the children to determine if they safely negotiate independent mobility in that environment (walking up/down curbs and stairs, walking on uneven surfaces and inclines, and climbing/using playground equipment) and then to provide therapy based on the child’s needs. If there are ride on toys and tricycles, the child would also need to learn how to use them.

2. When do you recommend the use of SMAFOs and the discharge of SMAFOs?

I recommend using a certain type of SMAFO when the child needs this support for his/her degree of ligamentous laxity. If possible, I try to change to less support when the child is in kindergarten/first grade so that the child can be more independent with putting on/taking off shoes. I would be glad to discuss this with you. Please call me if you would like to discuss.

3. I typically see the private physical therapist discharge services after a child starts walking. Has this been found to be best practice?

There have not been any studies about this. After listening to the webinar, you know my recommendations to refine the walking pattern and to learn gross motor skills (running, walking up/down curbs and stairs, jumping, etc) in a way that develop the crucial components. For more information about gross motor skills in the Post Walking period of development, I would recommend my book Gross Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals (published by Woodbine House 2014).


Paige, a parent and 21 & Change org member in Ruskin, FL:

1. Is there any correlation between improved gross motor skills and improved speech and language skills?

I have not seen studies proving this.

2. How do we incorporate the gross motor skills practice into play activities to make it fun?

I always want to set children up to have fun when they are learning gross motor skills! It is important to pick the best motivators so your child wants to move to it and then has time to play with it while practicing the gross motor skill.

3. How do we know when our child has successfully achieved a gross motor milestone and it’s time to progress to the next one?

When a child initiates doing the skill and can do it on his/her own, then it is time to teach him/her the next level skill.


Kerry-Ann, a parent in Kingston, Jamaica:

1. At what age should I expect my daughter to be walking? She is now 1 year and 2 months. She always stands, but never takes a step.

There is a sequence of walking skills (webinar slides #31-37– cruising, walking with 2 hand support, walking with 1 hand support, lunging steps, first independent step) that a child needs to practice to gain the balance, strength, endurance and confidence to take independent steps. In my data collection of walking (with my definition of walking: to walk independently for 15’ distances), the median age is 24 months.

2. Is toe-tipping normal?

I have not heard of toe-tipping and do not know what you mean so, unfortunately, I cannot answer this question.


Shontie, a parent in Memphis, TN:

1. How can I get the school to implement these crucial components through more PT? I have a 3 year old daughter who receives PT 4x a year only and it’s due to her being able to walk. She cannot jump yet and many of the things you speak about may be helpful with posture and other gross motor skills. May I refer to your evidence based information in order to request more physical therapy in her school?

I would recommend discussing your child’s PT goals with her PT at school. Through this, you will understand how her current PT program is addressing the crucial components. If additional PT services are needed to address components or skills not being focused on, then she could be seen for private PT services on an out-patient basis.


Lyudmila, an org member in Erie, PA:

1. How can I help a child accept weight through the entire foot and how can I prevent them from shifting their weight to the heel?

If the child is shifting weight to his/her heels, it is because the child is standing with his/her pelvis behind his/her heels (side view) as in slide #26. If the child is standing (with support) as is seen in slides #27-28, then he/she will weight bear through his/her entire foot.


Marsha, an org member and other relative in West Melbourne, FL:

1. I have a 3 month old who is just starting PT. What questions can I ask to ensure her Physical therapist will set us on the right track? Are there certifications we should look for?

I would ask for a pediatric physical therapist and one who has had extensive experience with children with Down syndrome.


Yani, an org member and parent in Ruskin, FL:

1. Our 8 y/o daughter has a moderate pelvic tilt, low calf musculature, leans forward while running, slaps feet on surface when walking or running, and places a great deal of emphasis on her thighs for support. How might we start to correct this?

I would recommend practicing running (slide #40) with hand support to encourage a longer stride (step length) so your daughter learns to use hip hyperextension and toe push off (see slide #38). Also check your child’s shoes and foot support to see if this is contributing to her walking/running (foot slapping) pattern.


Angela, a parent in Boulder, CO:

1. Why is a laced shoe better? Is Velcro closure on athletic shoe not good? My son has hot dog insert is age 4 and running.

With your son’s foot support (HotDog inserts), the laces can be tightened to support his feet optimally over the foundation of the inserts. If he uses Velcro, the fit will not be as snug so his foot will move within the shoe and will be less stable.


Angela, a parent in Lorton, VA:

1. I have an 11 year old girl who has the s shape side profile. She started with Sure Steps in early years and then the doctor said she doesn’t need them. But she currently has them again because her feet were so pronated in and she couldn’t walk for too long. We are working on issues but is it too late to truly correct? Are we only compensating now?

You can still help her develop the strength to stand with an optimal posture and you can provide support (to her feet) to help her alignment for walking. If you would like guidance for exercises and foot support, she could be evaluated by a physical therapist in your area.


Elizabeth, a parent in Lakewood, OH:

1. What do you think about using supportive clothing- such as hip helpers or spio pants/vest to help children to develop correct muscle use in learning to sit/stand/walk?

I am familiar with these supports but I have not used them extensively in my treatment. My focus is on active movements when practicing skills and I provide handling to cue muscles to activate.


Patricia, a parent in Buranby, Canada:

1. I am an occupational therapist. I was just wondering what you would like OTs to know about GM development and how do you see us collaborating with PTs in help with gross motor development?

We each have different frameworks to observe the child (for each skill) and that is why the collaboration is so beneficial. I hope the webinar today gives you a framework for the goal of PT. To say how we would collaborate to help with gross motor development would depend on the specific gross motor skill to be practiced.


Jennifer, an org member in Sandusky, OH:

1. Is there anything that can be done to correct crucial components if they have been learned incorrectly? Is there a time limit to this?

You can improve the crucial components and it is important to identify what is missing or needs to be remediated and then to plan strategies (exercise, supports, etc) to develop them.


Samantha, a parent in Seattle, WA:

1. For the kids who are walking and older, are skiing and swimming good exercises for building up the core/abdominal strength?

Yes, children have improved core/abdominal strength from doing these activities. Also, running, climbing, and jumping are good for developing core strength.

2. My son is 6 and loves to run. His PT definitely works with him to jump.

If you need ideas for teaching your child to jump, you can refer to my book Gross Motor Skills for Children with Down Syndrome: A Guide for Parents and Professionals (published by Woodbine House 2014)—Chapter 13.


Hadley, a parent in Lodi, OH:

1. Our almost 3 year old son does well moving in and out of sitting but when he is working on something he does definitely contour to a rounded back. How do we get him to continue to sit up and have good posture when he’s concentrating? We have tried lots of things including prompts, a yoga wedge which does help some because it tilts his pelvis forward a little.

It is best to watch your child to see when he sits tall and then you can use that strategy/set up to increase the time that he sits tall. Sometimes, there will be times that he slouches but as long as this time is balanced with times that he is sitting tall, that is ok.


Tiffany, a parent in Brea, CA:

1. Does gross motor skills have any relation to fine motor skills?

They are related in that your child needs to be stable in a position so he/she can do fine motor skills with control. He/she also needs strength in his/her shoulders and trunk to manipulate toys well.

2. My 1 yr. old has been looking up and holding his arms out while moving all his fingers and I have to snap him out of it. Could this be seizures or spasms?

If you have this question, it is important to schedule an appointment with your child’s pediatrician to discuss what you are observing. You can videotape when your child does it and then show this to his/her doctor.

3. Is there an age guideline for what he/she should be doing by now? (Milestones that should be mastered by a certain age and how do we know if our children are where they should be?

See the references (slide #48) and my article that was just published by the Journal of Intellectual Disability Research.



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Be Beautiful Be Yourself Dance Winter Performance

December 12th, 2018 by Global Down Syndrome Foundation

Donations Open Doors To New Down Syndrome Education Center

December 8th, 2018 by Global Down Syndrome Foundation

Global Down Syndrome Foundation Receives Generous Daniels Fund Grant

December 4th, 2018 by Global Down Syndrome Foundation

The grant will help fund Global’s state-of-the-art Education Center for important life skills, education and vocational training for the differently-abled

Press Contacts:
Rejena | C: (240) 603-5494
Anca | C: (720) 320-3832

DENVER, CO December 4, 2018Global Down Syndrome Foundation (Global) announced today that it has received an $850K Daniels Fund grant – $100K to support Global’s life skills programs and a transformative $750K grant to help underwrite the buildout of Global’s state-of-the-art Education Center, expected to open in 2019.

The generous grant builds upon The Salah Foundation’s $1 million grant that secured the space for Global’s Education Center where programs will be held in The Salah Learning Zone. The Education Center will have a flexible design and storage to get maximum differing usage from the 2,480 square foot space.

Global intends to run several programs for students with Down syndrome including computer skills classes for various ages, and cooking and nutrition classes. In addition, Global will open up the space for non-profits and organizations serving the differently-abled community.

“We did an informal listening campaign with over 20 non-profits serving the differently-abled and the findings showed there is a great need for meeting space, classroom space, and that there are many ideas about new programs that can be launched at our Education Center,” said Michelle Sie Whitten, President & CEO of Global. “At the same time, we did a short informal survey of over 30 businesses in the Cherry Creek North area and all but four expressed interest in hiring a person with Down syndrome.”

With the generous Daniels Fund grant, Global will make vocational training and securing internships and jobs as a key priority. “We have supported Global’s life skills programs for several years and we are excited that the organization’s future programs have an emphasis on job training,” said Linda Childears, President & CEO of the Daniels Fund. “Global’s vision to find employment for its students in the Cherry Creek North area is very compelling for us as it fits in with our goal of helping people with disabilities achieve maximum independence and quality of life.”


About the 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 and the Anna and John J. Sie Center for Down Syndrome. To learn more, please visit

About Daniels Fund

The Daniels Fund, established by cable television pioneer Bill Daniels, is a private charitable foundation dedicated to making life better for the people of Colorado, New Mexico, Utah, and Wyoming through its grants program, scholarship program, and ethics initiative. Visit to learn more.

Global Down Syndrome Foundation Receives Generous Daniels Fund Grant

December 4th, 2018 by Global Down Syndrome Foundation

Dancing in the Streets benefits arc Thrift stores

December 2nd, 2018 by Global Down Syndrome Foundation

Global Down Syndrome Foundation Presents Leadership Awards to The Salah Foundation families and to the Vollbracht & Winfield families at the Grand Opening of its Headquarters

Press Contacts:
Rejena | C: (240) 603-5494
Anca | C: (720) 320-3832

DENVER, CO November 28, 2018 – Over 100 guests packed the lobby at the new headquarters for the Global Down Syndrome Foundation (Global) in the vibrant Cherry Creek North area. Governor John Hickenlooper gave an opening address before the awards ceremony and before the tour of the new building, which includes an Education Center and a future coffee shop.

At the event, Global presented its 21X21 Campaign Leadership Award to Noreen Salah Burpee, Executive Director of The Salah Foundation. “Noreen and her amazing family have been our champions for many years giving us guidance and helping us to grow,” says Michelle Sie Whitten, President & CEO of Global. “Last year they provided a historic, extremely generous $1 million grant to Global that will underwrite The Salah Foundation Learning Zone in our Education Center where we will provide transformative educational programs to people with Down syndrome of all ages.” Fred Churbuck and Megan Fearnow, two of Burpee’s children who also serve on The Salah Foundation board, were in attendance to support Global and receive the award.

“The education center was a team effort and The Salah Foundation is very proud to be a part of this team that will help so many people with Down syndrome,” says Noreen Salah Burpee. “This building is a tribute to the generosity and the goals of Anna and John J Sie. It is through their vision and dedication and the tireless efforts of their daughter Michelle Sie Whitten that this is all possible.”

Global also presented its Community Leadership Award to the Vollbracht and Winfield families. Leslie and Bill Vollbracht are the founders of Land Title Guarantee Company and have been pillars of the Colorado business and philanthropic community for years. Their daughter and son-in-law, Alison and Kirby Winfield, are carrying on that family tradition in Washington state with their two children, Katherine (Kate) and Kirby Jr. Kate is Global’s Ambassador and happens to have Down syndrome. “The Vollbrachts and Winfields have always been there for us from the beginning and understood the importance of the research and medical care on our children’s health outcomes,” said Whitten. Alison and Kirby Winfield and the Vollbracht’s daughter Dana Vollbracht were on hand to help accept their families’ award.

“We have seen firsthand the incredible impact Global has on the lives of people with Down syndrome,” says Allison Winfield. “In a world where public resources and awareness are scarce, Kate and her peers need organizations like Global to advocate for their health and interests and push the envelope on evolving research and therapy. Global constantly raises the bar for how all of us include and support people with Down syndrome.”

Global’s new headquarters is located at 3239 E. 2nd Avenue on the corner of 2nd and Adams in the Cherry Creek district, which boasts hundreds of restaurants, spas, shops, and banks. The building is an important legacy project for cable TV pioneers and community leaders, Anna and John J. Sie. Their granddaughter, Sophia, was born with Down syndrome. The Sie’s daughter and Sophia’s mom, Michelle Sie Whitten, runs the Global Down Syndrome Foundation. Michelle, Tom, Sophia, and Patrick Whitten were all in attendance for the Grand Opening.

The building is 53,879 square feet in total and was built by GH Phipps Construction Companies, designed by Saiber Saiber Architecture, kitted out by OfficeScapes and branding by ArtHouse Design. The second and third floors of the building are occupied by Global staff while the fourth floor is dedicated to the Anna and John J. Sie Foundation and AJS Ventures. The first floor, where the Grand Opening event took place includes a lobby, an Education Center measuring 2,480 square feet and a future coffee shop that occupies 1,624 square feet. The Education Center will open its doors by the end of 2019 and the coffee shop is expected to open sometime in 2020.

“This building will not only be a headquarters but a destination for inclusion, inspiration and achievement,” says John J. Sie. “We want to have thousands of people who are differently-abled working together with the broad-based community and finding ways to accomplish great things together.” An important focus of The Salah Foundation Learning Zone and the Education Center will be vocational training toward job placement.

The impressive list of event attendees included award-winning actor and Global board member, John C. McGinley, Born this Way TV phenom, Megan Bomgaars. Philanthropic leaders included Peter Kudla, Mike Fries, Don Elliman, Ellen Bruss & Mark Falcone, Laura Barton & Willy Matthews, Charlie Gallagher, Sunny Brownstein, Susan Karsh, Casey & Brett Perry, Greg Karsh, Nancy Sevo, Don & Susan Sturm, Edie Marks, Chris & Lu Law, Joy Dinsdale, Jay Mills & Kiana Akina, Michele & Michael Ritter, Mac & Rebecca Macsovits, Bob & Liane Clasen, Dick & Marcia Robinson, Arlene & Barry Hirschfeld , Kalleen Malone, Allison & Brian Levin, Brian & Shelley Hart, Brook Griese, Andy Irvine, and Katy Call. Other Community Leaders included Rebecca Chopp, Christoph Heinrich, John Reilly, Stephen & Dee Daniels, Jennifer Darling, and Miguel Lovato.


About the 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 and the Anna and John J. Sie Center for Down Syndrome. To learn more, please visit

10 Local Charities Worth Your Dime on Colorado Gives Day

November 30th, 2018 by Global Down Syndrome Foundation