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From Down Syndrome WorldTM Issue 3 2018

THANKS TO GLOBAL’S GROWING NATIONWIDE NETWORK OF ADVOCATES AND SELF-ADVOCATES, BRILLIANT AND PASSIONATE SCIENTISTS, AND OUR CONGRESSIONAL CHAMPIONS — SENATORS ROY BLUNT (R-MO), PATTY MURRAY (D-WA), AND CHRIS VAN HOLLEN (D-MD), AND REPRESENTATIVES TOM COLE (R-OK), ROSA DELAURO (D-CT), CATHY MCMORRIS RODGERS (R-WA), AND PETE SESSIONS (R-TX) — DOWN SYNDROME RESEARCH HAS A NEW HOME AT THE NATIONAL INSTITUTES OF HEALTH AND, FOR THE FIRST TIME IN 20 YEARS, HAS RECEIVED ITS FIRST REAL BOOST IN FUNDING. THE AGENCY’S “INCLUDE” PROJECT SPELLS OUT EXACTLY HOW THESE HARD-EARNED FUNDS WILL BE USED.


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 2003, MICHELLE SIE WHITTEN gave birth to her first child, Sophia, who happens to have Down syndrome. On a mission to understand how to increase lifespan and improve health outcomes and quality of life, Whitten found herself meeting with then-Director of the National Institutes of Health (NIH), Elias Zerhouni, M.D. Dr. Zerhouni informed Whitten that despite being the leading cause of developmental delay in the U.S. and the world, Down syndrome
was one of the least-funded genetic conditions by the NIH, and he gave her an important piece of advice: “If you do just one thing, create an academic home for Down syndrome research … and rebuild the pipeline of science.”

And so started Whitten’s journey establishing the Global Down Syndrome Foundation and the Linda Crnic Institute for Down Syndrome, focused on research and medical care.

“Following that meeting, we started traveling to Washington, D.C. almost every month to educate Congress and the NIH on this issue,” says Whitten, President and CEO of Global.
“We met so many families whose children had health issues, and they helped us with petitions, phone calls, letter writing, and face-to-face meetings. In our very first letter writing campaign, 1,000 people contacted Congress advocating for more Down syndrome research funding. It wasn’t easy, and it would take a decade to succeed, but we made it happen!”

Fortunately, Global was able to attract scientists “brilliant of mind and heart” — Tom Blumenthal, Ph.D., Joaquín Espinosa, Ph.D., and Huntington Potter, Ph.D. Dr. Espinosa, now the Executive Director of the Crnic Institute, has clearly mapped out how people with Down syndrome have a different “disease spectrum” where they are highly predisposed or protected from major diseases that represent 60 percent of all the deaths in the U .S. Most importantly he made a game-changing discovery recasting Down syndrome as an immune system disorder.

Armed with the support of the Down syndrome community and groundbreaking science, the pivotal point for Global came in fall 2017. On Wednesday, Oct. 25, 2017, for the first time in its history, the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, which provides federal funding for the NIH, held a hearing on current and future research funding priorities for people with Down syndrome. The hearing included testimonies from Global and the Crnic Institute. Global had two goals: to move Down syndrome under a trans-NIH structure, since the condition touches so man y diseases, and to reverse the terrible disparity of funding.

The results were astounding, with the entire committee standing in ovation at the end of the hearing , primarily for the self-advocate testimony by Frank Stephens. The subsequent NIH funding increase was clearly led by Congressional champions: Chairs Rep. Cole and Sen. Blunt and Ranking Members Rep. DeLauro and Sen. Murray, as
well as Reps. McMorris Rodgers, Sessions, Mike Coffman (R-CO), and Cheri Bustos (D -IL).

At Global’s inaugural AcceptAbility Gala in Washington, D.C., Rep. Cole announced the historic and significant $23 million increase in Down syndrome research funding at the NIH from $35 million in fiscal year (FY) 2017 to $58 million in FY2018. A subsequent $98 million has been budgeted for FY2019.
The NIH has embraced the FY2018 Omnibus Appropriations Report and has created a truly trans-NIH effort. Under the office of the Director, Down syndrome research will now be managed by the trans-NIH consortium “INCLUDE” (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). Eighteen NIH institutes and centers comprise the consortium, and the steering committee is led by three great supporters of Down syndrome research: Lawrence Tabak, D.D.S., Ph.D., NIH Principal Deputy Director and INCLUDE Chair; Diana Bianchi, M.D., Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); and Gary Gibbons, M.D., Director of the National Heart, Lung, and Blood Institute.

The FY2018 Omnibus Appropriations Report stated the following: “Down syndrome. The agreement directs the NIH Director to develop a new trans-NIH initiative — involving, at a minimum, NICHD, National Institute on Aging (NIA), and National Cancer Institute (NCI) — to study trisomy 21, with the aim of yielding scientific discoveries to improve the health and neurodevelopment of individuals with Down syndrome and typical individuals at risk for Alzheimer’s disease, cancer, cardiovascular disease, immune system dysregulation, and autism, among others. This initiative shall bring together research results that will be available to academic researchers, nonprofit organizations, and industry researchers. Funding for this trans-NIH initiative will supplement, not supplant, existing NIH funding levels for Down syndrome research.”


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!

2019 The Peanut Butter Falcon Theater Distribution List

August 1st, 2019 by Global Down Syndrome Foundation

The Peanut Butter Falcon Hits Select Theaters on August 9th! 

For more information, visit http://www.thepeanutbutterfalconmovie.com 

Austin, TX | Violet Crown Cinemas | 434 W. 2nd Street
Austin, TX | Arbor Cinemas at Great Hills 8 | Austin, TX | 9828 Great Hills Trail, Suite 800
Austin, TX | Alamo Drafthouse South Lamar | 1120 South Lamar
Charlotte, NC
| Manor Theatre 2 | Charlotte, NC | 607 Providence Road
Dallas, TX | Northpark 15 | Dallas, TX | 8687 North Central Expressway
Dallas, TX | Angelika Film Center and Cafe | Dallas, TX | 5321 Mockingbird Lane, Suite 201
Plano, TX | Cinemark West Plano 20 | Plano, TX | 3800 Dallas Parkway
Boulder, CO | Century 16 | Boulder, CO | 1700 29th St.
Denver, CO | Esquire Theatre | Denver, CO | 590 Downing Street
Laguna Niguel, CA | Rancho Niguel 8 Cinemas | Laguna Niguel, CA | 25471 Rancho Niguel Road
Los Angeles, CA | The Landmark 12 West | Los Angeles, CA | 10850 W. Pico Blvd.
Hollywood, CA | Pacific ArcLight Hollywood 15 | Hollywood, CA | Dome Entertainment Center
Irvine, CA | Edwards Westpark 8 | Irvine, CA | 3755 Alton Parkway
New York, NY | Lincoln Square 13 | New York, NY | 1998 Broadway
New York, NY | Angelika Film Center (6) | New York, NY | 18 W. Houston Street
Salt Lake City, UT | Century 16 – SLC | Salt Lake City, UT | 125 East 3300 South
Salt Lake City, UT | Gateway Megaplex 12 | Salt Lake City, UT | 165 South Rio Grande
Sandy, UT | Megaplex @ Jordan Commons | Sandy, UT | 9335 State Street

Protected: 2019 PBF Exclusive Screenings

August 1st, 2019 by Global Down Syndrome Foundation

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2019 Be Beautiful Be Yourself Fashion Show Kick-Off Party

July 30th, 2019 by Global Down Syndrome Foundation

Global Webinar Series – Summer 2019 Recap

July 23rd, 2019 by Global Down Syndrome Foundation

SUMMER 2019

Self-Advocates Win Landmark Federal Funding for Research: Join Global – Join the Movement


What You Need to Know


Overview & Speakers:

This webinar reviews how the Global Down Syndrome Foundation (Global) has worked with Self-Advocates, Congressional Champions, Scientists and the National Institutes of Health (NIH) to increase Down syndrome research funding at the NIH for the first time in nearly twenty years. Key takeaways from this presentation include:

The importance of research and medical care in elongating life and improving the quality of life

The history of Down syndrome being one of the least funded genetic conditions at the NIH

Global’s AMAZING progress – science and NIH funding

The Challenges still ahead

What Self-Advocates and families can do to support life-changing and life-saving research and medical care for people with Down syndrome

Michelle Sie Whitten, MA

Michelle Sie Whitten, MA

Michelle Sie Whitten, MA is the Co-Founder, President and CEO of the Global Down Syndrome Foundation (Global). Global is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education, and Advocacy. Prior to her career in the non-profit sector, Michelle was a cable TV pioneer in East Asia working for Liberty Media Corporation and Starz Encore. Her academic career was focused on international security and diplomacy and she holds a Masters degree and business certificate from Harvard University. She graduated Magna Cum Laude with a Bachelors degree from Tufts University and studied Mandarin Chinese and Women Studies at Peking University. Michelle is married to Tom, a British curator of Chinese contemporary art and they have two adorable kids, one of whom has Down syndrome.
Kevin Brennan

Kevin Brennan

Kevin Brennan partners with clients to craft and execute strategies involving public policy and government advocacy, with a particular focus on the health and biosciences, renewable energy, insurance and financial services, and food and agribusiness industries. Kevin draws from his experience as legislative staff for three Members of Congress and in senior government affairs positions at Amgen and the Arthritis Foundation to help clients advance their federal advocacy objectives.


Key Takeaways:


Powerpoint Presentation: Click to Download


Questions & Answers:

Howard, a parent in Aachen, Germany:

1. Great news about the NIH funding! But what’s the state-of-play in other countries? How are you advocating for DS overseas to achieve similar success at the global level?

Right now, our advocacy for NIH research funding is solely focused in the U.S. although we are aware of and encourage research support around the world.

Cassie, a parent in Estes Park, CO:

2. How can we stay up-to-date on what is happening in DC concerning Down syndrome funding and research?

Global hosts periodic webinars and provides web and email-based updates to self-advocates, families and friends on our progress in advocating for increases in federal funding for research including sample letters and materials to use in your communications to your Representatives and Senators.

Darcee, a caregiver in Belvidere, IL:

3. What is the best way to get started in trying to get your voice heard as an individual?

There are many ways to get started. Right now you can email your Senators and Representatives and ask them to support increased funding for the INCLUDE Initiative and Down syndrome research as part of the National Institutes of Health Fiscal Year 2020 budget. Additionally you can plan a visit to Washington to meet with your Senators, Representatives and their staff to educate them on Down syndrome and advocate for increased research funding.

Mirela, an organizational member in Tirana, Albania:

4. How Global support the families and people with Down syndrome in increasing their capacity to advocate (training, grants for local advocating organizations, parents network?

Global supports families by hosting trainings and educational opportunities such as our Quarterly Webinar Series, Annual Research and Medical Care Roundtable, and by providing Educational Grants to local Down syndrome organizations around the world to support education, training and advocacy work.

5. Does Global use the influence of the private sector (business) to advocate or allocate funds? Or international funding?

Global meets with many private sector businesses and continues to advocate for people with Down syndrome to further employment opportunities, to include in clinical research trials, to expand access to the entirely differently-abled community etc. We also work with other countries by awarding grants to host educational workshops and help influence private sectors in their specific countries.


Important Notice

The Global Down Syndrome Foundation’s employees and/or volunteers are NOT acting as your medical professional or attorney. Responses you receive via electronic mail, phone, or in any other manner DO NOT create or constitute a doctor-patient or attorney-client relationship between you  and the Global Down Syndrome Foundation (Global), or any employee of, or other person associated with, Global.

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

Dating and Down Syndrome

July 18th, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM Issue 4 2017

Recognizing your child is ready to enter the dating scene isn’t always easy. Noted sexuality educator Terri Couwenhoven helps both children with Down syndrome and their parents navigate these difficult waters.


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!

RELATIONSHIPS GIVE EVERYONE a chance to love and be loved, avoid loneliness and depression, and gain self-esteem — and people with Down syndrome have the same right to these relationships as typical teens and adults.

However, “it’s common for people with Down syndrome to experience oppression, denial, and control over the same sexual aspects of being human that typical adults enjoy in their lives,” said Terri Couwenhoven, M.S., AASECT, Certified Sexuality Educator. “This can lead to a denial of feelings and a reluctance to express themselves.”

That denial can perpetuate the myth that people with Down syndrome are asexual, she said. Parents can, and should, take the lead in helping their children develop the foundations of healthy relationships, and Couwenhoven shared three key tips for parents to approach the subject of dating and relationships.

ATTITUDE MATTERS

Parents need to have a positive attitude toward their teenager’s or adult child’s dating.

“Let’s face it, parents are influential in the dating scene for teens and adults with Down syndrome,” Couwenhoven said. “In addition to making sure their children have active social lives so they have access to potential partners, parents often need to coordinate, help plan, transport, chaperone, and coach — at least initially.”

Parents also serve as role models. Engage in honest and open communication with your own partner, and be attentive to your child’s needs.

OFFER CONCRETE INFORMATION ABOUT THE DATING PROCESS

Look for opportunities to explain dating before your son or daughter is old enough to actually date, Couwenhoven advised. For example, if an older sibling has a partner, explain why people date. Use specific language, such as “they spend time dating to see if they are a good match for each other.” If the couple breaks up, you can explain, “not all relationships work out. It takes time to find the right person.”

When your child gets older and develops a crush on someone who doesn’t return the affection, remind him or her that a romantic relationship can’t start unless both people have feelings for or are interested in each other, she added.

LET THEM PRACTICE DATING SKILLS

“Life experience is the greatest teacher of all,” Couwenhoven said. “Chaperoning is an excellent way for inexperienced newbies to practice the rituals of dating in the context of super vision and coaching.”

As your teenagers and young adults with Down syndrome become more mature and gain self-confidence, chaperoning becomes less necessary.


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!

Congenital Heart Defects and Down Syndrome:
What Parents Should Know

July 3rd, 2019 by Global Down Syndrome Foundation

From Down Syndrome WorldTM Issue 3 2018

This rare disease is significantly more common in children with Down syndrome. Understanding symptoms and early detection could save a life.

CHILDREN WITH DOWN SYNDROME face a high rate of congenital heart defects (CHDs). In fact, about 50 percent of infants with Down syndrome have some form of heart condition, compared with approximately 1 percent of typical infants, although it is unclear why these conditions occur so frequently in children with Down syndrome.
Three of the most common heart conditions seen in children with Down syndrome are atrioventricular septal defect, patent ductus arteriosus, and tetralogy of Fallot.

ATRIOVENTRICULAR SEPTAL DEFECT (AVSD)

AVSD is the most frequently diagnosed congenital heart condition in children with Down syndrome. Various studies place the incidence rate between 30 and 47 percent of CHDs in children with Down syndrome, according to the book Advances in Research on Down Syndrome. A study from the International Journal of Cardiology estimates that AVSD accounts for just 7 percent of CHDs diagnosed in all children. AVSD is characterized by holes between either the upper or lower chambers of the heart, the atria and the ventricles, respectively.
In less severe cases, atrial septal defects (ASD) or ventricular septal defects (VSD) can occur separately. Both are caused by a “hole” in the wall the separates chambers of the heart. ASD affects the top two chambers, while VSD affects the two lower chambers.
AVSD can be diagnosed during pregnancy via ultrasound but may not be evident until a child is a few months to even a few years old. The condition almost always requires surgery, the type of which will vary depending on the kind and degree of AVSD. According to the Society for Thoracic Surgeons, which tracks heart surgery outcomes for all children, AVSD surgeries have a near-100 percent survival rate.


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!

PATENT DUCTUS ARTERIOSUS (PDA)

PDA accounts for 5 to 10 per cent of all CHDs in full -term infants and between 20 to 60 percent of CHDs in pre-term infants. For children with Down syndrome, it accounts for between 5 and 18 percent. This heart defect occurs when a channel called the ductus arteriosus that connects a fetus’ heart and lungs in utero does not close after birth. While it is frequently diagnosed after birth, not all children exhibit symptoms. When symptoms do exist, they include tiredness, sweating, quick or heavy breathing, disinterest in eating, and not gaining weight as expected in a growing child.
Doctors generally employ four treatments for PDA: watchful waiting to see if the ductus arteriosus closes on its own, nonsteroidal anti-inflammatory medications, surgery, or an outpatient procedure called a transcatheter device closure. Most children undergo catheterization, according to the American Heart Association (AHA), but treatments chosen often depend on a child’s age, degree of symptoms, and whether the particular PDA responds to medications. Children with PDAs have a higher rate of mortality than children whose PDAs are closed with treatment, according to the American Academy of Pediatrics.

TETRALOGY OF FALLOT

This heart defect is fairly rare in all children. The CDC estimates that it occurs in only 1 in 2,518 (0.04 percent) of all live births. However, it accounts for 2 to 6 percent of CHDs in infants with Down syndrome.
Infants with this heart defect have four different problems: a ventricular septal defect, a narrow or obstructed pulmonary valve, an enlarged aorta, and a thicker-than-normal right ventricle. The combination reduces blood oxygen levels in the rest of the body.
Tetralogy of Fallot, which is usually diagnosed after birth, requires an open-heart surgery called complete intracardiac repair. As children grow up, they may need additional surgery to widen or replace a pulmonary valve, which can leak and lead to a condition called pulmonary backflow.
Research suggests that 90 percent of all infants who have surgery for tetralogy of Fallot live into their 40s, according to the Cleveland Clinic Journal of Medicine, but these children often face heart problems, such as arrhythmia and coronary heart disease, later in life and require lifelong follow-up care with a cardiologist.

DETECTING PROBLEMS

Certain CHDs can be diagnosed during pregnancy by a pediatric cardiologist through noninvasive testing, such as ultrasound or fetal echocardiogram. Early diagnosis of cardiac issues is crucial to ensure prompt medical response after delivery and to improve an infant’s chances to survive and thrive. In addition, a pediatric cardiologist provides ongoing care throughout childhood.
Given the frequency of CHDs in babies with Down syndrome and the optimal one-year surgical window, the American Academy of Pediatrics recommends every baby born with Down syndrome be evaluated by a pediatric cardiologist within one month of birth. This
recommendation includes children whose prenatal tests and general pediatrician found no trace of CHDs.
Whether a child with a CHD is diagnosed before or after birth, parents should, if possible, interview more than one pediatric cardiologist and cardiovascular surgeon, if necessary.
It’s also wise to ask an insurance provider about coverage for seeking a second opinion before parents decide on a care plan for their infant.

LONG-TERM PROGNOSIS

Until the early 1970s, providers were reluctant to perform heart surgery on children with Down syndrome who had CHDs, essentially predestining them to a lifetime of hear t problems. Research has since established that babies with Down syndrome fare very well after pediatric heart surgery, and delaying surgery beyond the first year of life increases the risk of problems in adulthood.
“It is much easier to find treatment for children with Down syndrome and heart defects than adults with the same condition,” says Dunbar Ivy, M.D., Professor of Pediatrics–Cardiology at the University of Colorado School of Medicine and Selby’s Chair in Pediatric Cardiology at Children’s Hospital Colorado.
Today, fewer providers avoid or delay surgeries to correct CHDs. Thanks to improvements in technology and greater knowledge of the conditions, doctors are better able to treat CHDs early, limiting their impact on a child’s life.
“If surgery is performed early, most children with Down syndrome and a hear t defect will do very well,” Dr. Ivy says.
As a child with Down syndrome and a CHD grows, he or she will need ongoing care from a cardiologist familiar with CHDs, Dr. Ivy added, whether or not the defect was repaired. Not all adult cardiologists are familiar with the unique needs of patients with congenital heart disease, but the Adult Congenital Heart Association provides an online directory at achaheart.org/your-heart/clinic directory that can serve as a starting point for research.

Global Recap of 2019 NDSC Annual Convention in Pittsburgh

June 29th, 2019 by Global Down Syndrome Foundation


Left to right: Dr. Joaquín Espinosa, Dr. Laurie Ryan, Dr. Dennis McGuire, Dr. Mike Rafii, Dr. Peter Bulova, and Dr. Huntington Potter

Engaging Roundtable Discussion

During Global’s Roundtable, speakers talked about the importance, the issues and the milestones in research and medical care for people with Down syndrome. No seats left in the house!
Speakers included: Quincy Jones Award Recipient Megan Bomgaars, and Global scientists & clinicians Dr. Mike Rafii, Dr. Laurie Ryan, Dr. Huntington Potter, Dr. Joaquín Espinosa, Dr. Peter Bulova, and Dr. Dennis McGuire.

Global’s 2019 NDSC Research & Medical Care Roundtable Recap




Left to right: Dr. Vellody and his brother Das present Dr. Joaquin Espinosa with 2019 President’s Award

Global Receives Prestigious President’s Award

The Global Down Syndrome Foundation was honored to accept the prestigious President’s Award at the 2019 NDSC Annual Convention. Presented at the Annual Convention Opening Session, Global was awarded for their dedication to Down syndrome research, their unprecedented advocacy work, and their tremendous positive impact on the Down syndrome community. Global’s longstanding relationship with the National Down Syndrome Congress will continue to flourish and together, they will work to improve the lives of individuals with Down syndrome.




Patricia Winders Honored

The Sie Center for Down Syndrome’s Director of Therapies & Senior Physical Therapist, Pat Winders, won an award for her poster on motor development for children with Down syndrome at the Down Syndrome Medical Interest Group Conference held in in Pittsburgh.



Left to right: Dr. Mike Rafii, Dr. Jaoquin Espinosa, Dr. Huntington Potter, and Dr. Laurie Ryan

Captivating Workshops

Global scientists, clinicians, Down syndrome experts, and self-advocates presented thoughtful workshops on everything from aging in adults with Down syndrome and Alzheimer’s to teaching motor skills to advocacy training and more.

An Unprecedented and Exciting Down Syndrome Research Discovery Engine – The Crnic Institute Human Trisome Project
Dr. Joaquín Espinosa, PhD

How to Teach Your Child Gross Motor Skills – Birth to Walking
Patricia Winders

Promoting Strengths and Adaptive Resources in Persons with Down Syndrome
Dr. Dennis McGuire, LCSW, PhD

How to Teach Your Child Gross Motor Skills – Post-Walking Skills
Patricia Winders

Alzheimer’s Disease and Down Syndrome
Dr. Huntington Potter, PhD

CPAP, Hearing Aids, & Glasses, Oh my! How to Help my Child Wear Their Medical Equipment
Dr. Lina Patel, PsyD

Making the Most of a Behavioral Health Consultation for Adults with Down Syndrome
Dr. Dennis McGuire, LCSW, PhD and Bryn Gelaro, LSW

Educational Grants Announcement 

Research & Medical Care Roundtable

For more information on any of our workshops or speakers, contact events@globaldownsyndrome.org


Pay it Forward – Educational Grants to 12 Down Syndrome Organizations

In 2019, Global awarded $75,000 to twelve of its member organizations, bringing the total given through its Educational Grants program to over $625K. Since 2012, Global has awarded grants to 72 innovative educational programs developed by local, national and international Down syndrome organizations.

Global’s 2019 Educational Grants Recipients


Global Receives Prestigious President’s Award

June 29th, 2019 by Global Down Syndrome Foundation


Left to Right: Dr. Vellody and his brother Das present Dr. Joaquin Espinosa with 2019 President’s Award

The Global Down Syndrome Foundation was honored to accept the prestigious President’s Award at the 2019 NDSC Annual Convention. Presented at the Annual Convention Opening Session, Global was awarded for their dedication to Down syndrome research, their unprecedented advocacy work, and their tremendous positive impact on the Down syndrome community. Global’s longstanding relationship with the National Down Syndrome Congress will continue to flourish and together, they will work to improve the lives of individuals with Down syndrome.

GLOBAL DOWN SYNDROME FOUNDATION AWARDS OVER $625K IN EDUCATIONAL GRANTS

June 27th, 2019 by Global Down Syndrome Foundation

Awardees Announced at the National Down Syndrome Congress Annual Convention Include Twelve Organizations from the US and Abroad

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

Pittsburgh, PA (June 27, 2019) – Today, the Global Down Syndrome Foundation (Global) awarded $75,000 to twelve of its member organizations, bringing the total given through its Educational Grants program to over $625K. Since 2012, Global has awarded grants to 72 innovative educational programs developed by local, national and international Down syndrome organizations. This year’s grants will fund programs in Alaska, Honduras, Indiana, Kansas, Minnesota, Nebraska, New Jersey, Ohio, Tennessee, and Texas. The grant awards were announced at the Global Down Syndrome Foundation Research & Medical Care Roundtable during the NDSC Annual Convention, which attracted nearly 4,000 attendees in Pittsburgh, PA.

“We are so inspired by the efforts of Down syndrome organizations all over the world working to make a difference in their communities,” said Michelle Sie Whitten, President and CEO of Global. “Global is proud to say that in just 8 years, our Educational Grant program has helped serve over 14,000 self-advocates, parents, caregivers, and professionals. We are thrilled to be able to fund the most grants ever in one cycle this year, and we are excited to see these extraordinary programs in action.”

The 2019 Global Educational Grant recipients and their funded programs are (in alphabetical order):

1. Alaska Down Syndrome Network (Anchorage, AK) “Alaska Regional Conference” will bring families from rural and small towns to Anchorage for a weekend conference to gain more knowledge on medical issues, behavioral issues, and education topics as well as connect with other area families.

2. Down Syndrome Association of Greater Cincinnati (Cincinnati, OH) “Caring for the Adult with Down Syndrome” will bring medical experts to Cincinnati Children’s Hospital Thomas Center for Down Syndrome for Grand Rounds presentations to introduce medical professionals to the newly revised Medical Care Guidelines for Adults with Down Syndrome.

3. Down Syndrome Association of Indiana, Inc. (Indianapolis, IN) “Public Policy 101” is a series of live workshops and webinars which will cover a variety of topics related to preparing participants to take action on public policy issues, such as how to contact your local legislator, current issues facing families of children with Down syndrome, and more.

4. Down Syndrome Association of Memphis & the Mid-South (Cordova, TN) “Individual Education Plan (IEP) Coaching/Seminar” will bring educational experts to the Memphis area for a monthly seminar to give parents and teacher the tools and knowledge necessary to have successful IEPs.

5. Down Syndrome Association of Middle Tennessee (Mt. Juliet, TN) “Extraordinary Lives Conference” is a one-day conference that will bring in national and regional professionals to share their expertise in the latest research and best practices for helping those with DS through three tracks for educators, caregivers, and self-advocates.

6. Down Syndrome Association of Minnesota (St. Paul, MN) “Statewide Learning Conference” is a weekend conference that will inspire and equip parents and individuals with Down syndrome with the most up to date information, research, and best practices in healthcare, inclusive education, community integration, and economic self-sufficiency.

7. Down Syndrome Association of the Valley (Boardman, OH) “Summer Enrichment Program with Aaris Therapy” is a comprehensive weeklong program where participants with Down syndrome will concentrate on effective communication and improving social skills to help build important learning skills in the education process.

8. Green Oaks Education and Support, Inc. (Arlington, TX) “Improving Health and Wellness through Education and Practice” is a two-part program involving an interactive cardio workout for people with Down syndrome to improve their level of physical activity and an educational series for caregivers to promote health in the home.

9. Hearts2Honduras, Inc. (El Progreso, Honduras) “Love and Learn 21 Program” is designed to provide educational opportunities for people with Down syndrome in Honduras. Teachers will partner with participants and their families to create individualized plans in an effort to meet the needs of each student.

10. Inclusion Connections (Olathe, KS) “EmployAbility” provides the educational opportunities and vocational training needed for young adults with Down syndrome and other developmental disabilities to acquire the necessary skills and knowledge required to obtain paying jobs.

11. KIIDS, Inc. (Bellmawr, NJ) “Pathways to Independence” will consist of a series of workshops, each with a specific focus and aligned with the long-term goal of establishing skills and knowledge to enable middle and high school aged people with Down syndrome to successfully navigate the choices, freedoms and challenges that come along with the transition to teen and adulthood and to become as independent as possible.

12. Little Leaf Learning Center, Inc. (Omaha, NE) “Operation School Success” is designed to assist families and children with Down syndrome in their transition from pre-school classes into kindergarten. This includes IEP training, education on rights, legal counselling, and parent to parent discussion groups for parents.

“Global Down Syndrome Foundation has enriched the lives of individuals with Down syndrome of all ages,” said Jim Hudson, Executive Director of Down Syndrome Association of Greater Cincinnati. “In 2015, we received a Global Educational Grant for our academic program for children with Down syndrome ages K-8. This year, we were lucky enough to receive another grant for our program to care for adults with Down syndrome. We are so appreciative to partner with Global on bettering the lives of people with Down syndrome at all stages of their lives.”

“We are honored to receive a grant for our ‘Statewide Learning Conference’ from Global, a true leader in research and medical care for people with Down syndrome” said Sarah Curfman, Executive Director of Down Syndrome Association of Minnesota. “We look forward to collaborating with Global on best practices for creating resources for families and educators, plus hosting a successful event.”

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).