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We've received 20 scientific research proposals that are being evaluated for potential funding.
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BOARD ELECTION RESULTS
Jane Emanuel, M.D. is re-elected to board.
Newly elected to board:
Christopher Daniak, M.D.
Tracy VanHoutan
Debbie Ham
Rob Geer
All four new board members are parents of a child/ren with Batten
disease.
BDSRA wishes to thank outgoing board members for their dedication, hard
work and inspiration:
Linda Houghtby
Wendy Bills, PhD
Warren Shuros
Fred Weaver
UPCOMING CONFERENCEJoin us from July 29th - August 1st in Chicago at the Oak Brook Marriott Hotel for our Annual BDSRA Conference. Find more details & registration form below.
2010 BDSRA Conference Link
BATTEN AWARENESS WEEKENDDue to all the great efforts of not only staff but the familes and friends of BDSRA we were able to increase traffic to the website by 200%, with 80% of the 1,461 visits being first time viewers of the site. Other stats to note include:- 58% of visits came from referring sites [229 from facebook.com]
- Average time on site was 02:07
BARKIN' FOR BATTENOver 25 dogs, their owners, and countless volunteers braved
some drizzly weather to attend the 1st Annual Barkin' For Batten Charity Dog
Walk held at Hannah Park in Gahanna,
Ohio on May 22, 2010 to raise money for
BDSRA. Over $3,200 was raised to help
our children and families as they battle against this debilitating and deadly
disease.
Visit website
DRUG TRIAL UPDATE
The drug trial for Juvenile Batten disease remains in waiting at this
time. BDSRA's portion of funding for the trial has been achieved and
approved for expenditure. Request for the remaining amount of needed
funding has been submitted to FDA by the Batten Disease Diagnostic and
Clinical Research Center at the University of Rochester and an answer
will hopefully be forthcoming soon. Watch BDSRA's website for updates.
NEW EDUCATIONAL RESOURCES ON LAW AGAINST GENETIC DISCRIMINATION NOW AVAILABLE With genetic testing becoming increasingly pervasive in medical
care and our daily lives, three of the most prominent organizations in
genetics—the Genetics and Public Policy Center at Johns Hopkins
University, the National Coalition for Health Professional Education in
Genetics, and Genetic
Alliance—have teamed
up to produce educational materials about the Genetic Information
Nondiscrimination Act (GINA), a landmark federal law that protects
individuals from the misuse of genetic information in health insurance
and employment. Read More Here
INSURANCE REFORMS BEGIN IN SEPTEMBER...OR DO THEY?The White House and Congress have emphasized that, while some aspects of
the new health care reform law will take up to four years to implement,
others—including elimination of lifetime insurance caps—will take
effect this year. On April 1, President Obama said that it “ will take
about four years to implement this entire plan, because we’ve got to do
it responsibly, we need to get it right. But there’s also a set of
reforms that will take effect this year. So I just want to…I want
everybody to understand what’s going to happen this year…. Read More Here
BATTLING BATTEN DISEASE
Edie Dockter's story: My husband, Gene, and I are the parents of
three children with Batten disease. Our children were born in 1963, 1965
and 1969. Our oldest child, Laurie, showed symptoms for Batten disease
in 1969, when she was 6 years old. She started having problems with
coordination, speech, and cognitive skills. After seeing many doctors
and undergoing numerous medical tests, she was finally diagnosed at age
10. At that time, we were told our daughter was one of the few children
with a diagnosis of neuronal ceroid lipofuscinoses (NCL).
Read More Here
STAFF UPDATE
We've brought on a new staff member for the national office.
Eric Leslie is a marketing, and multi media specialist that has been working with our organization on a contract basis for two years.
KROGER COMMUNITY REWARDSEnroll or Re-Enroll to earn $$ for BDSRA through Kroger Community
Rewards.
To help BDSRA earn Kroger Rewards, enroll today at
www.krogercommunityrewards.com.
If you are already enrolled to help us
in this program, all participants must re-enroll to keep earning funds
for our charity. The scan bar is no longer needed to achieve reward
points, simply enter your Kroger Plus Shoppers Card to earn these funds
for BDSRA.
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In Loving Memory
- Kevin
Copous
May 28, 2010
Juvenile NCL
- Shiv Rana
June 4, 2010
Variant Late Infantile
- Christopher Rubino
March 17, 2010
Unknown
- Michael Briggs
June 11, 2010
Juvenile NCL
T-Shirt Giveaway40 of the above t-shirts are available for
giveaway donated by Julie Jarvis in Michigan. The company is available to
produce more for our organization. Contact aryan@bdsra.org for more info.
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