Archive for the ‘Featured Story’ Category

Global sends congratulations to all the models, organizers, and self-advocates in Aruba for the second annual Sea Bunita Sea Bo Mes!

Two of the models who will be rocking the runway in Aruba this year were also models at Global’s Be Beautiful Be Yourself Fashion Show! We wish the best of luck to Jake, Shawndré, and to all of the other models in this year’s fashion show.

We are honored to have been invited to the event. Global is busy preparing for a summer of advocating and financially supporting research and medical care for people with Down syndrome, which has prevented us from attending. In our absence, President and CEO Michelle Sie Whitten offers words of encouragement and support for this amazing event in Aruba!

Since 2013, Hans Geerman, President and Director of the Fundación Sea Bunita Sea Bo Mes, has been working on the Dutch Caribbean island of Aruba to change the way people see individuals with Down syndrome.

“We started organizing different events to make the Aruban community more aware of integration and inclusion for people with Down syndrome,” Geerman said.

Originally, the foundation operated under the name Ban Papia,, which means “Let’s Talk,” until an influential trip to Denver to attend Global Down Syndrome Foundation’s 2015 Be Beautiful Be Yourself Fashion Show, where his son Shawndré modeled. The visit proved so inspirational that Hans decided to bring that experience back to the island.

“After the event, we returned to Aruba and sponsored the first Aruba fashion show as Fundación Sea Bunita Sea Bo Mes (Be Beautiful Be Yourself Foundation),” he said. “The show starred members of our community with Down syndrome as models and local business and media personalities as their escorts. The event was a sellout, and the feedback has been positive beyond what we could hope it would be.”

Two notable articles about the current state of Alzheimer’s disease and Down syndrome research cite the Global Down Syndrome Foundation’s pivotal role in propelling this field to the forefront of scientific research.

Appearing in The Wall Street Journal, the article “Down Syndrome Is Thought to Hold Clues to Alzheimer’s” acknowledged Global’s leadership, along with the Linda Crnic Institute for Down Syndrome and the national Alzheimer’s Association, in their collective efforts to raise awareness, galvanize scientific interest and secure funding for research on Down syndrome and Alzheimer’s disease. The three groups organize annual roundtables and collaborate through the Alzheimer’s Disease and Down Syndrome Joint Grant Initiative. The initiative funds grants focused on understanding the development and devising treatments for Alzheimer’s disease in individuals with Down syndrome.

In “As Boomers Age, Alzheimer’s Research Picks Up. Will A Cure Follow?” written for Colorado Public Radio, author John Daley spoke with Huntington Potter, PhD, the Crnic Institute’s Director of Alzheimer’s Research, and Director of the Rocky Mountain Alzheimer’s Disease Center at the University of Colorado School of Medicine, about his important work studying Alzheimer’s disease and Down syndrome, including a push to create a blood test able to detect those at high risk for developing Alzheimer’s.

And while Potter focuses on the genetic connections, his partner Jonathan Woodcock, MD, Clinical Director at the Rocky Mountain Alzheimer’s Disease Center, and Assistant Professor and Clinical Director, for the Memory Disorders Clinic in the Department of Neurology at The University of Colorado School of Medicine, concentrates on crucial clinical trials, such as a current trial of a drug called Leukine.

To learn more about the relationship between Down syndrome and Alzheimer’s disease and about Global’s research initiatives in this regard visit globaldownsyndrome.org/down-syndrome-and-alzheimers-disease/

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.

Global will launch three new Health and Wellness programs in 2016 thanks to a generous Daniels Fund grant:

The new football and cheer camps will be held on the CU campus where each participant will be paired with a football player or cheerleader for one-on-one attention, assistance and fun. They will also get expert instruction from CU football coaches.

The experience culminates with a scrimmage on the field during halftime of the home opener at Folsom Field in Boulder, Colorado, on Saturday, September 10th, where the University of Colorado Buffaloes football team will take on the Idaho State Bengals. It is expected there will be University of Colorado celebrity coaches at the scrimmage as well.

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 DanielsFund.org to learn more.

The Salah Foundation has provided a generous matching grant of $187K to support the Global Down Syndrome Foundation’s Health & Wellness: Continuing Education for Adults with Down syndrome research program. Building on the program The Salah Foundation previously helped jumpstart, researchers at the University of Denver and Colorado State University are looking at measuring cognition in addition to garnering a better understanding of best practices in life skills and post-secondary education for people with Down syndrome.

The core of the program is a four-module education program carefully designed for adults with Down syndrome. Each module will be taught by respected experts in their fields and will provide participants with important life skills over a course of ten weeks. The entire four-module research program, including data collection, is designed to take place over an 18-month period. Participants will be evaluated before, during, and after each module to provide researchers with valuable empirical data about what works best to improve the life skills of adults with Down syndrome. Instructors work with the participants to develop individualized goals.

A preliminary research module ran from November to December 2015 with excellent results and concluding in various research adaptations.

The follow-on research module, Dance & Physical Fitness, is structured to help participants select enjoyable physical activities, plan weekly schedules that factor in recreational physical activities, and understand basic fitness and the impact on the body. These skills are especially important for the Down syndrome community due to a tendency towards obesity, and because exercise may also help increase cognitive functioning.

The other educational research modules in the program complement each other and provide a range of life-skills training. One module, Safety & Awareness, will focus on how to safely interact with others when socializing or in public. A third module, Communication Skills and Pragmatics, will focus on enhancing social interaction skills, especially peer socialization. The fourth module, Nutrition & Healthy Choices, will provide participants will knowledge about nutrition, meal planning, and how to cook and serve a meal in a social situation with friends or family.

Adults with Down syndrome ages 21 and up are being recruited to participate in the follow-on research program, which will begin on Monday, February 8, 2016 at the University of Denver. Dr. Karen Riley, Dean for the Morgridge College of Education at the University of Denver, is spearheading the research component of the program along with Dr. Deborah Fiddler, Professor of Human Development and Family Studies at Colorado State University.

The Salah Foundation is a private foundation by invitation only, that supports non-profits organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is special interest in education, medical research, community development and self-sufficiency programs. In addition to funding the new Continuing Education program. The Salah Foundation has helped fund Global’s Be Beautiful Be Yourself Hollywood Ball, as well as the I ♥ YOU Dance Parties, which provide members of the Down syndrome community with an avenue to socialize, get exercise, and become more comfortable with self-advocacy. For more information, go to http://www.globaldownsyndrome.org/programs-conferences-grants/programs/i-love-you-dance-parties-for-adults-with-down-syndrome/