Archive for July, 2019

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.


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!