News and What's Happening
Disability and Prenatal Testing New Advances, New Perspectives
On Friday, January 31st College of Charleston will host a symposium on prenatal testing and disability. The purpose of the panel is to spark new conversations about the way we use prenatal testing, and to consider the way our culture views disability. For some, disability is analogous to disease – something to be avoided and if possible, perhaps eradicated. This symposium will present an alternative viewpoint, namely that disability is a natural part of the human condition, and an important form of diversity. The discussion for this panel will focus very specifically on Down syndrome, as there is new prenatal testing that allows fairly accurate prenatal diagnosis of Down syndrome with a simple blood test at 10-11 weeks gestation. However, the broader issues are relevant to all forms of disability, and even to other characteristics that parents might select for (or against).
The panel will include four speakers:
Dr. Brian Skotko (Massachusetts General Hospital) will discuss the new prenatal test for Down syndrome, and will also suggest new approaches that doctors can take as they deliver the diagnosis so that families have full, accurate, and updated information.
Dr. Alison Piepmeier (College of Charleston) will discuss her experiences as a parent, as well as her research that has examined what the prenatal and postnatal experiences have been like for other parents of children with Down syndrome.
Bryann Burgess is a recent graduate from the CarolinaLIFE program, and she will discuss her own life as an adult with Down syndrome.
Patricia Bauer is a journalist and political pundit who has advocated for people with Down syndrome since the birth of her daughter more than two decades ago.
Please feel free to invite everyone you think might be interested. The event is free and open to the public.
It will take place on Friday, January 31st in the Wells Fargo Auditorium (Beatty Center) from 12:00-3:00.
Lotta Granholm-Bentley, Director for the Center on Aging
Dr. Bentley will be joining our DSAL meeting at 7 on Thursday January 9th:
Who am I? Lotta Granholm-Bentley, Director for the Center on Aging and MUSC Brain Bank.
The work in the lab is focused on both clinical and basic science studies regarding the aging process in individuals in Down syndrome. We recently got a grant from the Alzheimer’s Association to study biomarkers in the blood that can predict if someone will get Alzheimer or not.
This study is done in collaboration with Harvard, Johns Hopkins, and Banner Health in Arizona.
Four years ago, we started a human brain bank at MUSC to help individuals with different neurological conditions in South Carolina. I am the chair for a national organization of research centers working together in this effort specifically for Down syndrome.
I would like to meet with the group to discuss our Brain Donation program, as well as preventive studies going on that your family member may benefit from. I would also like to help disseminate information from my national connections regarding what can be done now, and in our community to prevent dementia in people with Down syndrome.
Finally, I am also interested in prevention therapies in mothers of children with Down syndrome, since there is an increased risk of Alzheimer especially after a certain age.
All these studies are ongoing and we can work together in this effort.
I am very excited to work with your group on different aspects. I do not need blood or other tissues at this point, simply would like to urge people to sign up for the brain donation program.
FitCatZ Program -College of Charleston
Susan Flynn of College of Charleston's School of Education, Health and Human Performance is running a fitness program for kids with intellectual and emotional disabilities. The FitCatZ program is an aquatic and motor program offered for children with disabilities. The program is designed to help the participating children become efficient movers in a fun and safe environment. Each child in the program is assigned a trained clinician who will work one-on-one with the child for the two-hour gym and swim program. The program supports ages 3 to 10.
Registration is due by Jan 16th and class begins Thursday evengins Jan. 30th.
Please contact Susan Flynn at firstname.lastname@example.org or 765-414-3837 for additional information, an application or to address any questions.
The program in only its second full year has already raised over a quarter of a million dollars for cognitive research being conducted at institutions like Johns Hopkins, Stanford and UCSD, and it is growing. Interest and participation across the country is helping RDS re-state public support for research that has the potential to develop therapies that will assist memory and learning in persons with Ds, and perhaps offset the increased likelihood of Alzheimer’s disease.
For more information, see their website- http://www.researchds.org/
RDS runners has some teams for specific marathons, but people (like me) can elect to run a marathon--or half, in this case--and fundraise through crowdrise.com. I would like to invite anyone else in DSAL to do this with me for the Charleston whole or half! It's easy. See http://www.researchds.org/rds-runners/. You can make your own fundraising page and run (it would be fun to train together!) or contribute to mine: http://www.crowdrise.com/FoolsforJules/fundraiser/kathyrogers1.
Please feel free to email me at email@example.com with any questions, or if you'd like to run together!!
On Saturday August 24 dozens of DSAL families gathered at the James Island Splash Zone for a day of water park fun! I think we all feared the worst Saturday morning as rain clouds passed above the Lowcountry, but the weather held! The rain never materialized and the sun came out as subs were served for lunch! Gene Carpenter did a fantastic job coordinating this event and planning the lunch! It was great to see old friends catch up and new friendships begin! There were 4 new famlies to DSAL that attended. Some were new to the area and some were families with new babes! It was a beautiful day!
Swim Camp was held for the second year at Hobcaw Yacht Club thanks to the leadership of Mary Shaw! 15 campers with Down syndrome ages 7 to 15 enjoyed a nearly one to one ratio with swim buddy.
Elizabeth Carpenter has been selected to attend the Special Olympic National Games to be held June 2014 in Princeton, NJ. The SO National Games are held every 4 years at different locations around the country. Elizabeth was chosen based on her times from the SO State Games held at Fort Jackson in May 2013.
Elizabeth always loved the water and taught herself to swim at age 3 in the waves off of Sullivan's Island. She started swimming in Special Olympics at age 6 with the Smiling Sharks under the leadership of DSAL's own Cate Cusick. An athlete can train with a team but is not eligible to compete until age 8. She has competed in every summer game held at Fort Jackson since then - always bringing home a medal! After several years as a Smiling Shark, Elizabeth joined the Piranha swim team at the Mt. Pleasant Rec Department under Coach Shelli Davis. She also swims weekly with a coach, Jon Compton at the Rec Department. Elizabeth also swims in summer league with the Hobcaw Marlins.. Elizabeth is so excited about this amazing opportunity.
Courtesy of Gene Carpenter
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