Archive for February, 2016

Global in WSJ/CPR, $100K Daniels Fund Grant, Empire Set Visit and More

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/

Inspired by the joyful and giving atmosphere of Global Down Syndrome Foundation’s Be Beautiful Be Yourself Fashion Show, Terrence Howard made a generous and spontaneous donation to the live auction of a visit to the Chicago set of his hit FOX show, Empire. Mr. Howard attended the event as a celebrity escort for DeOndra Dixon, Jamie Foxx’s sister and former Quincy Jones Exceptional Advocacy Award recipient.

The lucky winning bidder, Joe Lembeck, graciously gave the visit to his friend Staci Mantegazza and her daughter. The women enjoyed an incredible day on location in Chicago, and raved about their “once in a lifetime experience” saying, “It was awesome!” The women were given a bag of Empire gifts and were thrilled and surprised to be cast as extras in an episode of season 3.

Last year’s fashion show garnered a record-breaking $2 million in donations to support Global’s initiatives of research, medical care, education and advocacy for people with Down syndrome.

Join us this year on November 12th at the 2016 Be Beautiful Be Yourself fashion show in Denver, Colorado and help Global set a new record!

Marcus Sikora keeps adding to his list of talents—actor, singer, and now author. The 25-year-old’s first children’s book, Black Day: The Monster Rock Band, released in 2015 to positive reviews.

Set on Halloween night, the story centers on Brad, a boy who dreams of being a rock star. He stumbles on a group of monsters playing together, but they don’t want a human in the band. While Brad works to change their minds, he also discovers they are facing their own challenges.

Marcus created conceptual drawings for illustrator Noah Witchell, who also helped Marcus and his family develop an animated DVD of the book. Marcus even co-wrote lyrics and sang lead vocals for the song “We are the Band (Black Day).”

Marcus’ mother, Mardra, helps put her son’s words and thoughts on paper, but she emphasizes that credit for the story and the accolades belong 100% to Marcus.

“I’m delightfully surprised at how people have taken it and read it and are appreciating it and opening conversations beyond what I even imagined. Marcus is an exceptional teacher,” she says.

The Sikora family lives in Omaha, Nebraska, but made a special trip with several friends to attended Global’s 2015 Be Beautiful Be Yourself Fashion Show, and lend their support to Global’s fundraising efforts.

Already contemplating a sequel, it doesn’t look like Marcus will be slowing down any time soon. You can find out more about Marcus and buy his book at www.BlackDayBook.com.

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.