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)
Loyal members have been BDSRA’s foundation and an inspiration to become the internationally respected organization we are today. Celebrate our 30th year by becoming a member: http://bdsra.org/bdsra-advocacy/bdsra-membership/ (Read More)
Six amazing Batten siblings have registered to run the Disney Princess ½ marathon or 10k at Walt Disney World on February 25th and 26th, 2017. They are Megan Chandler, Addie Heuchan, Kody Maynard, Mike McDonough, Jeni Montavon and Sara Thompson. Each of them has had a sibling that has been diagnosed with Batten Disease. Batten Disease is a rare, fatal, neurological disease affecting children of various ages. Currently there is no treatment or cure and it is always fatal.
You can do a virtual run with the group to show your support. You can also purchase a Princess Run t-shirt. T-shirt orders must be received by January 14th to ensure delivery prior to the race. See the T-shirt design on the team members individual pages.
If you have bracelets in honor or memory of your child, please send one to the BDSRA at 1175 Dublin Road, Columbus, OH 43215 and they will be worn by the runners on race day. (Read More)