2015 BDSRA Conference and Hotel Reservations

10923460_886590218047391_241766103610793704_oVisit our 2015 BDSRA Conference page on Facebook.

Hotel reservations are now available for the 2015 Annual Family Conference. This year it will be at the Eaglewood Spa and Resort in Itasca IL, July 9-12. We strongly suggest that if you are flying, that you land at O’Hare International Airport. Please call the hotel directly to reserve your room, and if you will have a wheelchair let them know, we have made special arrangements with the hotel. Be sure to mention “Batten Disease” or “BDSRA” to get the discounted rate of $107 per night. Reservations must be made by June 15th. The phone number is 877-285-6150, and their website is http://www.eaglewoodresort.com/ Conference registration will be available the beginning of March. As always, please contact us if you have any questions, tkirby@bdsra.org or 614-973-6013. We look forward to seeing everyone in July.
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CLN2 Enzyme Replacement Trial Opens First US Site

BDSRAWe are very happy to announce that the first United States site for the BioMarin CLN2 enzyme replacement study has been listed on clinicaltrials.gov. Dr. Emily De los Reyes at Nationwide Children’s Hospital in Columbus and her co-PI, Dr. Lenore Leowald are currently assessing children to begin the study in December. To learn more about the official guidance, and criteria, go to http://1.usa.gov/1Hr3IbI.  Tracy VanHoutan, Lance Johnston, researchers from universities all over the world and BioMarin have made this important advancement for families and children with our utmost thanks!
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Charlee Nelson Inspires Utah Legislation Named in Her Honor

The little girl who loved to sing, dance, and sing Twinkle, Twinkle Little Star was able to put a face on what it really meant to need a medical miracle, her mother said, which was her greatest gift for so many others facing severe seizure-inducing conditions.

Nelson familyFor Catrina and Jeff Nelson, losing their 6-year-old daughter Charlee on March 15, 2014, to late infantile Batten disease has been like a bad dream.  In the midst of their grief, the family stood in the private office of Utah Governor Gary Herbert the next day as Herbert signed “Charlee’s Law,” in a quiet ceremony.  Also known as HB 105, Charlee’s Law will allow those with intractable epilepsy to first acquire written permission from a neurologist and then apply for a waiver to import cannabis oil.  The Utah Legislature formally passed the bill March 13, 2014 after Charlee and her parents arrived on the floor of the House and Senate to witness the vote. According to Catrina and Jeff, Charlee held on until the legislation was passed after many weeks of severely declining health and complications.  After battling mononucleosis in October and surgery for a feeding tube, their daughter’s strength slowly diminished.  
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International Partners Advance Batten Disease Research Targets

150x150BDSRA, in collaboration with international and family foundation partners,
has announced grants totaling $408,000 to advance research in Batten disease.      International Funding Partners Advance Batten Disease Research Targets   COLUMBUS, OHIO (April 24, 2014)  The Batten Disease Support and Research Association (BDSRA), in collaboration with international and family foundation  partners, has announced grants totaling $408,000 to advance the development of treatments and cures for Batten disease. Co-funders BDSRA-Australia, the Batten Disease Family Association of the United Kingdom, Noah’s Hope, and Hope 4 Bridget joined with BDSRA to support projects that span the United States, the United Kingdom, Australia, and Germany.   Investigations to identify drug targets, drug discovery, and expand a patient registry have been funded through awards to six researchers:  David Palmer, PhD, Lincoln University of New Zealand; Stephan Storch, PhD, University Medical Center Hamburg-Eppendorf, Germany; Angela Schulz, PhD, University Medical Center Hamburg-Eppendorf, Germany; Jonathan Cooper, PhD, King’s College, London; Jeffery Gerst, PhD, Weizmann Institute of Science, Israel; and Erika Augustine, MD, the University of Rochester.
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April 2014 Newsletter

April 2014 NewsletterBDSRA announces global research grants and programs in April Newsletter.  In collaboration with international and family foundation partners, BDSRA has awarded research grants for 2013 that span the U.S., Australia, Germany, and the United Kingdom.  Proposals were funded that focused on identifying drug targets and drug discovery, developing a patient registry, and expanding projects in the basic biology of Batten disease.  To read more details as well asnews about programs, conference, and families, go to April Newsletter
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ourboys 5k/10k

ourboys 5k/10kourboys 5k/10k
April 12, 2014
Harris Road Middle School
1251 Patriot Plantation Blvd
Concord NC 28027 Online Registration and more info at http://davidsontiming.com/2013/11/our-boys-5k-10k-2014/
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Get Involved and Make it Happen: February is membership month for BDSRA

Get Involved and Make it Happen: February is membership month for BDSRATo join or renew your 2014 annual membership,
which is $40 per family, go to 2014 Membership Dues Why Join BDSRA?  Because membership is a vital link to others
facing Batten disease, and membership strength is a leading indicator
to policy makers and pharma that Batten disease deserves
attention, support, and funding.  Read more about membership here For questions email tkirby@bdsra.org
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