BDSRA’s Annual Report is now available! 2016 was an eventful year for us. We were approaching 30 years as an organization and reflected upon the many events, families and researchers that made it so memorable.
From our first Batten Awareness Weekend Virtual 5K to family contributions to a CLN3 and education textbook in the works, contributions were made to our growing community from every corner of the United States and far beyond. Thank you for everything you’ve done with us. We are glad to share with you the summary of our accomplishments and celebrate what we have been able to do together.
To read the 2016 BDSRA Annual report click here
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October 5, 2017
Dear BDSRA Friends,
The Batten community has had an historic year in treatment and science—with an FDA approved treatment for CLN2, gene therapies moving forward, and new discoveries announced seemingly each week. Help BDSRA keep this momentum as we fulfill our new, expansive strategic plan beginning in 2018. It is an exciting time and we want you to be part of the new vision.
The BDSRA Board of Directors will have three available seats beginning January, 2018. The board and staff seek individuals who are motivated by the opportunities and challenges of fundraising and resource development, governing, research, and outreach to families.
Some Board basics:
Terms are for 3 years, and Board members must be current dues paying members of BDSRA.
By-laws indicate that 60% of the board membership must be a parent of an affected person. Board members may serve consecutive terms.
Board members are required to attend two meetings in person each year and are responsible for paying the associated costs for transportation, hotel and meals. (Read More)
Join us June 3rd and 4th as we raise awareness for Batten disease! Each year, during the first weekend in June, the Batten Disease Support and Research Association celebrates Batten Awareness Weekend to promote the need for research and support for families. This year we are celebrating 30 years of BDSRA by hosting a virtual 5K Run for Research.
It is just like any other 5K, except there is no official race location. The virtual part of this means no traveling and no early start times! It also means you get to choose where, with whom, and even how you want to complete the 5K. This 5K can be done at any time and on either day during Awareness Weekend. It can even be done in increments throughout the course of the weekend. Keep track of your distance until you hit the 5K. If you haven’t registered for the Run for Research virtual 5K you can click here for more information and registration. (Read More)
We are happy to announce that registration for the 2017 Batten Awareness Weekend Virtual 5K is now open! Each year, during the first full weekend in June, the Batten Disease Support and Research Association celebrates Batten Awareness Weekend to promote the need for research and support for families. This year, as we celebrate 30 years of BDSRA, we invite you to Run for Research. Great advances in scientific research have been made in the last 3 decades, and we need to keep moving forward to find treatments and cures for all forms of Batten disease. Join us as we work to fund a cure!
Click here to register: https://bdsra.redpodium.com/2017-batten-awareness-weekend-virtual-5k (Read More)
The U.S. Food and Drug Administration today approved Brineura (cerliponase alfa) as a treatment for a specific form of Batten disease. Brineura is the first FDA-approved treatment to slow loss of walking ability (ambulation) in symptomatic pediatric patients 3 years of age and older with late infantile neuronal ceroid lipofuscinosis type 2 (CLN2), also known as tripeptidyl peptidase-1 (TPP1) deficiency.
Click here to read the full FDA News Release (Read More)
Thank you to our early 2017 BDSRA Family Conference sponsors we are on the way to having a fantastic 30th anniversary celebration. The generosity of Rally for Rex, Gardner Denver Corporation, Our Promise to Nicholas, Ethan’s Reason, Polaryx Therapeutics, Noah’s Hope/Hope 4 Bridget and the Center for Rare Disease Therapy at Children’s Hospital of Pittsburgh of UPMC will make it possible to offer quality sessions, programs and outings for all attendees. Please join these partners and become a conference sponsor today. The deadline for sponsorships is May 15th. Click here for more information: http://bit.ly/2nG3dtc (Read More)