UC Davis (Sacramento), March 9, 2013 – Researchers at this University of California campus have announced plans to develop a clinical trial where they would infuse adult human stem cells into the tongues of a small set of swallowing impaired patients by Christmas day 2014. Although stem cells have been used successfully in the treatment and repair of other human organs and tissue, this will be the first step in a process to strengthen and restore a vital part of one’s swallowing function.
Over the next few weeks, NFOSD will be meeting with Congressional staff members in both the Senate and House of Representatives to raise dysphagia awareness and seek guidance on how to increase federal funding for swallowing disorder research.
NFOSD launched a petition two weeks ago to increase swallowing disorder awareness and research funding at NIH. The petition is an important step in raising awareness and increasing attention to swallowing disorders. Meeting with Congressional staff members is another way of achieving those goals.
LET’S MAKE OUR VOICE BE HEARD: SIGN THE PETITION AND SHARE IT. Do it for someone you love or someone you don’t even know. Do it for those still isolated and suffering. Let’s not rest until they too can have birthday cake, thanksgiving dinner, hot soup on a cold day, cool water on a hot day and can sit at our tables once more.
The NFOSD would like to alert appropriate interested parties to this opportunity to support feeding tube research and earn some money at the same time. This opportunity is being coordinated by the Oley Foundation (www.Oley.org).
A research company is looking for patients and caregivers to give feedback on a prototype of a new tube feeding pump. Participants must have at least 6 months of experience using a pump. Adolescent (13+ y.o.) and adult patients are invited to participate, as well as caregivers of pediatric patients. Note that patients / caregivers who participated in the May focus group or July one-on-one product evaluation interviews are not eligible to participate in these sessions.
The Feeding Tube Awareness Foundation is hosting its third annual Feeding Tube Awareness week in February.
The mission of Awareness Week is to promote the positive benefits of feeding tubes as a life saving medical intervention. The week also serves to educate the broader public about the medical reasons that children are tube fed, the challenges that tube feeding families face and day-to-day life with a tube fed child. Feeding Tube Awareness Week connects tube feeding families. Seeing how many other families are going through similar things makes people feel less alone.
[Editors note. The NFOSD published Jack Eadon’s story in mid-November. He has a website, www.jacksgettingback.com where he has chronicled his medical and personal journey. On January 14, 2013 he began an intensive two week “Boot Camp” to try and regain his swallowing ability. As President of the NFOSD, I communicate with a lot of people suffering from dysphagia. One of the pleasures of this position is meeting other people, like Jack, who are determined and committed to do what they need to succeed. The NFOSD wishes Jack the best and hopes this intensive approach to therapy opens a new avenue in our arsenal for fighting dysphagia.]