Archive for the ‘Medical’ Category

People with Down syndrome and their families are Republicans, Democrats, and Independents. As a nonpartisan, leading research and advocacy organization, the Global Down Syndrome Foundation (Global) is focused on protecting and furthering the rights of people with Down syndrome regardless of party. To this end, we are deeply engaged with developments associated with health care reform, and we are providing an update to our friends and supporters on how this legislation may impact individuals with Down syndrome, how our community can participate in this national debate and take action.

Several weeks ago, President Trump, House Speaker Paul Ryan and other Republican leaders introduced the American Health Care Act (AHCA) to repeal and replace major pieces of the Affordable Care Act also known as Obamacare. The President could not garner enough votes within the Republican Party to pass the AHCA in the House. However, the President and his administration along with several members of Congress have continued negotiating further modifications to this legislative proposal and it is possible that the House of Representatives will schedule a vote as early as this week.

Global is encouraged that certain Obamacare provisions have been retained by the new proposal such as parents being allowed to keep their children up to age 26 on their health insurance policy. However, as the newly negotiated proposal stands, Global is concerned that there is not enough protection for people with pre-existing conditions. Given that Down syndrome may be considered a pre-existing condition by many health insurers and given the prevalence of other pre-existing conditions like certain cancers, and diabetes among individuals with Down syndrome, the importance of this issue cannot be overemphasized.

In particular, we respectfully urge our President and Congress to not include state waivers that would allow health insurers to charge much higher premiums to Americans with pre-existing conditions. We also oppose elimination of the “essential health benefits” requirement meaning health plans could discontinue coverage for many crucial medical services.

If you share these concerns, or have other concerns, please contact your local U.S. Representative and let them know that these areas of health care should not be sacrificed and that the most vulnerable Americans need protection.

As Congress continues debate on health care reform, Global is dedicated to working with our friends on both sides of the aisle, and with our Down syndrome and differently-abled communities, to ensure that people with Down syndrome continue to have access to affordable, quality health insurance.

Thank you for your advocacy and support!

Want to reach out to your U.S. Representatives to voice your concerns? Here’s a script to follow if you do contact them: 

“Hi.  My name is _________ and I live in [Hometown, State].  I’m a constituent and Global Down Syndrome Foundation advocate.  My mailing address and/or email address is _______________ so that you can send me a response to my call.

I understand that the House of Representatives is considering legislation that would make changes to the patient protections in the Affordable Care Act.

I am particularly concerned about a provision in the legislation that would allow health insurers to charge much higher premiums to Americans with pre-existing conditions.

Some health insurance plans consider Down syndrome to be a pre-existing condition.  Additionally individuals with Down syndrome have a much greater chance of having other pre-existing conditions like cancer, heart disease, and diabetes.

I am also deeply concerned that the bill would eliminate the “essential health benefits” requirement meaning health plans could discontinue coverage for many crucial medical services.

Please tell the Representative about these concerns and ask that they refrain from passing health reform legislation that eliminates these important patient protections and limits the scope of medical services available to our community.

Thank you.”

The Global Down Syndrome Foundation and Megan Bomgaars, star of A&E’s Born This Way, have teamed up to continue the fight for further research of auto-immune disorders. Megan suffers from celiac disease, an auto-immune disorder that affects people with Down syndrome at a rate ten times greater than in the typical population. Megan launched Global’s celiac disease research and awareness campaign at the March 11th I Love You Dance Party where she danced the night away with 150 celebrants and encouraged fellow self-advocates to participate in a simple Down syndrome and celiac disease research program aptly named “Spit to be Fit!”

Through the Crnic Institute’s Grand Challenge Grant Program, Global funds research by Dr. Richard Spritz, M.D., Program Director for the Human Medical Genetics and Genomics Program at the University of Colorado School of Medicine. Dr. Spritz’ research could lead to a test that identifies people with Down syndrome who have the highest risk for celiac disease and other autoimmune disorders including type 1 diabetes, autoimmune thyroid disease, vitiligo, and rheumatoid arthritis. Early detection would allow early intervention and treatment and could have application to the broader population suffering from such autoimmune disorders.

Celiac disease is an autoimmune disorder where the affected individual has a hypersensitivity to the protein gluten—commonly found in wheat, barley and rye—which, when digested, causes damage to the small intestine. In addition to the common uncomfortable symptoms, some celiac sufferers with Down syndrome have symptoms including anemia and behavioral changes. Megan knows the challenges of celiac disease all too well. Though there is no benefit to a gluten-free diet for those without a celiac disease diagnosis, due to the high incidence of celiac disease in individuals with Down syndrome, experts recommend they get screened for the disorder with a simple blood test.

For over 5 years, the Sie Center has been supporting children with Down syndrome and their families by offering a variety of specialized clinics including the Feeding Clinic.

The Feeding Clinic is comprised of several experts in Down syndrome who conduct an overall assessment and provide a multi-disciplinary, collaborative approach to care. These specialists include a Developmental Pediatrician or Nurse Practitioner, Physical Therapist, Feeding and Swallowing Specialist, and Social Worker. There are times when it is necessary to have nutrition or a lactation specialist come to the Sie Center to consult on a patient as well.

Arwen Jackson

Arwen Jackson, MA, CCC-SLP, a feeding and swallowing specialist at the Sie Center, describes the clinic as an ideal place to come for determining specific strategies and appropriate next steps to assist in safe and efficient eating and drinking. Eating and drinking are both critical issues for children with Down syndrome because they are prone to feeding and swallowing challenges.

“Children with Down syndrome can present with medical conditions that impact breathing, endurance, and digestion. The multi-disciplinary approach of the Sie Center allows families to receive hands on care from multiple specialists in one clinical appointment,” says Jackson.

The feeding clinic takes place once a week on Thursday mornings. They usually see 3-4 patients and appointments last around three hours. Parents can expect to receive supportive strategies and feeding equipment based on the child’s particular needs. Additionally, they will get specific goals and recommendations for type and frequency of therapy when needed. Jackson describes the most rewarding part of a clinic visit as “watching a caregiver smile in response to a successful feeding experience.”

For parents experiencing feeding and swallowing issues, Jackson offers the following guidance as a starting point:

1. Safe and supportive positioning is crucial for the child’s success with oral feeding especially in the presence of low muscle tone.

2. Feeding development is best supported within the context of a typical mealtime routine, when a child is offered foods that match their oral motor skills, and their caregivers pay attention to their child’s verbal and non-verbal communication.

3. Seek help from a feeding and swallowing specialist if you observe coughing or choking during drinking, unexplained respiratory illnesses, concerns with weight gain, overstuffing and pocketing of foods, refusal behaviors, decreased variety and volume of food consumed, delayed attainment of self-feeding skills, or challenges transitioning to cup drinking.

As part of a network of affiliates including the Global Down Syndrome Foundation and the Linda Crnic Institute, the Sie Center for Down Syndrome helps advance the total care of children with Down syndrome by providing excellent medical care, therapy, research and advocacy. For more information visit www.siecenter.org.

Recipient of Global’s Award of Excellence in Behavioral Health & Nutrition and author of the Down Syndrome Nutrition Handbook, Joan Guthrie Medlen shares her three important tips for healthy living and well-being.

“Advice for People with Down Syndrome on Eating Well and Living Well”

The November 2015 Global Down Syndrome Foundation Educational Series focused on Nutrition and Lifestyles for Children, Teens, and Adults with Down Syndrome.

160 parents and professionals attended the two-day conference with overwhelmingly positive feedback:

“Always excellent presentations, content, facilities, food, etc. Thank you!” – Jerry Shelsta

“Thank you for all you provide for our community!” – Jenni Rysavy

“Always enjoy the great learning opportunities you provide. Thank you!” – Barbara Ritchie

“Presenter was well informed and well spoken. Loved the sensory section!” – Melissa Armour

“Lots of Q&A time!”– Ashley McCasuker

Joan Guthrie Medlen, Med, RDN, LD, is a registered dietitian who became involved with Down syndrome issues when her son Andy was born with Down syndrome 26 years ago. She has published two popular books promoting healthy lifestyles for people who are differently-abled, The Down Syndrome Nutrition Handbook, and Cooking by Color: Recipes for Independence. She is also the winner of numerous awards, including the Global Down Syndrome Foundation’s Award of Excellence in Behavioral Health & Nutrition. To access her Global Down Syndrome Educational Series presentation please click here.

The Global Down Syndrome Foundation raises critical funds every year to support the excellent medical care provided at the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.

The Sie Center provides the highest quality of comprehensive care to children with Down syndrome by coordinating medical care, along with therapies including speech, physical and occupational. The Sie Center serves as a resource for families and primary care doctors by providing up-to-date information while also supporting parents who have received a prenatal diagnosis of Down syndrome.

The Sie Center has treated over 1,100 unique patients with Down syndrome. The multi-disciplinary “Dream Team” of experts has more than 80 years of combined experience in caring for children with Down syndrome and developmental disabilities.

In 2015, the Sie Center expanded its staff by hiring an education specialist, psychologist and a speech language pathologist. In 2016, look for new clinics and outreach programs designed to assist even more patients and families.

This important work could not be accomplished without support of donors.
Please consider donating today.

Generous grant from the Anna and John J. Sie Foundation enables Sie Center to expand dream team with Education Specialist, Alissa Beck.

The Anna and John J. Sie Center for Down Syndrome is proud to announce the addition of Alissa Beck as the Center’s new Education Specialist. The Sie Center opened in November 2010 and has treated over 1,000 unique patients with Down syndrome under the age of 26. But, because children with Down syndrome and their families have a significant need for the services of an Educational Specialist, the Anna and John J. Sie Foundation provided a generous grant to expand the Sie Center’s roster.

Beck’s role is to improve educational performance, self-esteem and socialization skills in order to enhance the quality of life of children and young adults with Down syndrome. Prior to joining the Sie Center, Beck was an integral part of the Denver metro area’s Cherry Creek School District. She has dedicated her career to promoting quality education for all students through inclusion, differentiation, support and compassion.

“I am very excited about the relationships I am being able to foster with the families that come to the Sie Center and to support them through their child’s educational journey,” said Beck.

As Educational Specialist, Beck will provide resource support for children with Down syndrome to address their school-related issues. Many schools are not organized to support children with Down syndrome. Beck will serve as a liaison and outreach coordinator for these families’ in their efforts to maximize the student’s academic experience and success.

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