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Upcoming Family Fundraisers
4th Annual OurBoys 5K: May 8th - Concord, NC
Battin' for Batten Disease First Annual Softball Tournament: May 22nd - Blue Springs, MO
Paws for a Cause: May 22nd - Columbus, OH
2nd Annual Hayden's Hope Harley Ride: May 22nd - Two Rivers, WI
3rd Annual Hayden's Hope Benefit: May 29th - Two Rivers, WI
2nd Annual Kick Batten's for Carl Youth Soccer Camp: June 12th -- Arlington, WA
Melissa Froio Foundation Annual Golf Tournament: June 18th - Sicklerville, NJ
Nick's Golf Outing: August 21st - Waterloo, IA
www.FightBatten.com
Josh Smerdel is a father, artist and advocate. His son, Mason, was diagnosed with JNCL in 2008. He has created a website to sell his amazing t-shirt designs and help build awareness for Batten Disease. His items are available for purchase now. You can visit Josh's website and view his items at http://www.fightbatten.com. You can email Josh with any questions at josh@fightbatten.com.
BDSRA 2010 Membership Dues
Membership dues for 2010 are increasing to $40.00. The dues have not been changed since the organization’s inception in 1987. Each paid membership receives one vote in the annual elections and all other voting matters. Dues help pay for things like printing and shipping brochures, educational materials, and the Illuminator. They also pay for our numerous programs and services available to everyone who calls or contacts us.
If you live in an area with an active chapter, please pay your $40.00 to your chapter. If you do not live in an area with an active chapter, you can pay your dues directly to the BDSRA National Office. You may also pay your dues online by clicking the button below. If you have any questions, please contact us.
Australia Chapter National Awareness Day
The BDSRA Australian Chapter is holding their National Awareness Day on Wednesday, March 31, 2010. This year the chapter is focusing on selling Batten teddy bears and pens throughout schools across Australia. They have done their National Awareness Day for several years now and have always had great success. We wish them the best of luck on this endeavor. Please check the Australian Chapter website for more information: http://www.battens.org.au/
BDSRA Medical Equipment Exchange
BDSRA maintains a Medical Equipment Exchange for its families. We have many pieces of equipment available including wheelchairs, suction machines, bath aides, feeding supplies, etc. These items are available to BDSRA families at NO COST! If you need a piece of equipment or have equipment to donate, please contact Amy Lombardi (kirka@bdsra.org).
In Loving Memory
Madeline Zellmer, daughter of Todd and Kim Zellmer, Shawnee Mission, KS
Born: 12/09/96 -- Died: 01/18/10 LINCL
James Rickman, son of David and Carol Rickman, Biloxi, MS
Born: 08/19/96 -- Died: 01/21/10 CLN6
Emma Dunnam, daughter of Kelvin and Christy Dunnam, Baytown, TX
Born: 03/01/06 -- Died: 02/01/10 INCL
Joshua Smith, son of Randy and Mary Smith, Parkersburg, WV
Born: 02/24/86 -- Died: 02/07/10 JNCL
Michele Sheridan, daughter of Steve and Bonnie Sheridan, Plymouth, MI
Born: 04/06/82 -- Died: 02/11/10 JNCL
BDSRA National Office Staff
Lance Johnston, Executive Director
Nancy Carney, RN, Medical Family Liaison/Educator
Amy Lombardi, MSW, LSW, Coordinator of Family Services
Adina Ryan, Director of Development
Donna Gunn, Office Manager
Batten Disease Support and Research Association
166 Humphries Drive
Reynoldsburg, OH 43068
1-800-448-4570
http://www.bdsra.org
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Rare Disease Day 2010 -- February 28th
Rare Disease Day is always the last day of February and is a day dedicated to raising awareness for the over 7,000 rare diseases that affect individuals around the world. You can visit the official U.S. Rare Disease Day website at: http://rarediseaseday.us/. The website has many ways that you can get involved and help raise awareness, not only for Batten Disease, but for every rare disease.
NORD Faces of Rare Disease Day
Patients and families interested in sharing their stories to promote awareness may send messages of 250 words or less to rarediseaseday@rarediseases.org. If NORD has opportunities to share these stories with the media, now or in the future, we will get back to those who submitted the stories to make sure they are still interested in sharing them. Discovery Health TV is NORD’s media partner for Rare Disease Day, and we will be expanding our partnership this year. We also anticipate many other requests for patient stories as February 28 approaches.
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BDSRA Funds Remaining Half of Research Proposals and One New Proposal
Shannon L MacAuley (Mark Sands, PhD) -- Washington University in St. Louis
"Activated Astrocytesas Therapuetic Targets in INCL" -- $40,000
Su Xu (Peter Lobel, PhD)--Center for Advanced Medicine and Biotechnology/Rutgers University
"Intrathecal Enzyme Replacement Therapy for LINCL" -- $31,500
Sandra Hofmann, MD, PhD -- University of Texas Southwestern
"Enzyme Replacement Therapy for Palmitoyl Protein Thioesterase Deficiency (INCL)" -- $60,000
Anil B. Mukherjee, MD, PhD -- NIH/NICHHD
"The development of a treatment strategy for patients with INCL, caused by PPT1 nonsense mutations" -- $65,000
Martin L. Katz, PhD -- University of Missouri
"A Possible Canine Model for Infantile NCL Therapy Development" -- $37,326
Sunita Biswas, PhD -- Massachusetts General Hospital, Boston
"Generation of Human NCL iPS cells for study of NCL disease biology" -- $40,000
NEWEST FUNDED PROPOSAL
Mark Sands, PhD -- Washington University in St. Louis
"Determine the efficacy of AAV5-mediated gene therapy and Cystagon for INCL" -- $9,792
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Social Security Adds 38 New Compassionate Allowance Conditions
The Social Security Administration announced this month that it will be expanding its list of Compassionate Allowance conditions from fifty to eighty-eight. The initial list was issued in October 2008. Among the list of new conditions is Batten Disease!
The Compassionate Allowance program helps expedite the process of Social Security eligibility for the list of accepted conditions. The normal eligibility process can take months but with a disease listed with the Compassionate Allowance program, the eligibility process will be a matter of days. The Compassionate Allowance program does NOT eliminate the FINANCIAL ELIGIBILITY guidelines that families or individuals must meet to receive SSI benefits.
If you have any questions, please contact Amy Lombardi at kirka@bdsra.org. Click here to read the entire press release from the Social Security Administration.
BDSRA 2010 Conference: Field of Hope and Dreams
When: July 29-August 1, 2010
Where: Chicago Marriott Oak Brook Hotel
1401 West 22nd Street
Oak Brook, IL 60523
Phone & Reservations: (630) 573-8555
Toll-free: (800) 228-9290
Conference Name: Batten Disease Association Conference
Website: http://www.marriott.com/hotels/travel/chiob-chicago-marriott-oak-brook/
Room rate: $95.00 per night plus tax
Meal prices will be available soon. You can also check the BDSRA website for updates.
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