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PARTNERING FOR SUCCESS
The Luke & Rachel Batten Foundation donates $40,000
  
In order to find a cure for Batten disease as quickly as possible, Beyond Batten Disease Foundation (BBDF) has implemented a comprehensive research strategy that informs everything we do. A key element of this plan is working together with other neurodegenerative disease foundations and Batten families to pool the resources and funding necessary to drive treatment-based research.

 

We are proud to announce a $40,000 gift from the Luke & Rachel Batten Foundation (LRBF). Support from the LRBF community, combined with funding from BBDF, allows us to continue the promising research of Marco Sardiello, Ph.D., at the Jan and Dan Neurological Research Institute at Texas Children's Hospital. LRBF and BBDF collaborated to initiate and fund the first phase of this project in 2012.
 
"LRBF intends to contribute funding to BBDF in support of your efforts to advance medical research. We believe this will result in the most effective and synergistic use of these funds." 
- Sam Watson, President
 
Through collaborations, co-funding and donations, BBDF has raised over $12 million since 2008.Click here to see all of our partners.
RUN TO THE SUN

Preparation for Run to the Sun 2014 is in full-swing. We have 21 teams registered, over 200 volunteers committed and, thanks to our sponsors, runners and donors, have raised over $58,000 towards our overall goal of $375,000. Don't wait to get involved with our biggest fundraiser of the year!

 

Sign up for our NEW 2K Fun Run! Taking place at 7 a.m. on the Murchison Middle School Track, the Fun Run/Walk is open to people of all ages and speeds. Participants can run individually or start a team. This new event is a great way for families to volunteer together. Fundraising is not required, but exciting incentives will be offered to those who do. 
  

Other ways to get involved: 

    
MARK SCHULTZ, PH.D. 
BBDF'S first graduating doctor
  
Your generous donations are supporting inspiring and promising researchers who are committing their careers to finding a cure for Batten disease. Mark Schultz is one such researcher who recently graduated with a Ph.D. with the help of BBDF funding in partnership with Batten Disease Support and Research Association (BDSRA). Mark has and will continue to devote his career to finding a cure for Batten disease. Read Mark's story �
 
AMPLIFY AUSTIN 2014 

Austin's biggest giving day of the year is almost here. For 24 hours starting at 6 p.m. on March 20, the community will show how much it cares by concentrating its giving power. The goal is to raise money for local nonprofits in Central Texas, and we ask that you make Beyond Batten Disease Foundation your cause. Mark your calendars for this online philanthropy event and keep Austin giving!

 

Afraid you'll forget? Schedule a gift ahead of time � 
FEATURED FUNDRAISERS  
Some of our youngest supporters found a way to make the best of the cold weather. Julianna and Henry Hooper and Ben and Grace Meinzer warmed hands, tummies and spirits by hosting a hot chocolate stand benefiting BBDF. Together they raised $200 for the foundation. Thank you! Learn more about hosting a third party event �  
AWARE OF RARE
Rare Disease Day 2014

 

There are over 7,000 known rare diseases in the world. One in every 10 Americans is affected by a rare disease. Every person carries 3 gene mutations that cause rare diseases. Parents who unknowingly carry the same mutated gene have a 25% chance of having a child with the disease and a 50% chance of having a healthy child who is a carrier.

 

Rare diseases affect us all. It affects children and parents and families. On February 28 BBDF joins the National Organization for Rare Disease (NORD) and thousands of other groups around the world to observe Rare Disease Day.  Please help us raise the awareness needed to help find a cure for Batten and all other rare diseases. We ask that you use this day to tell friends and family about your experience with BBDF and what inspired you to join the fight to eradicate Batten disease. Consider sharing your favorite Mother's Story through email, Facebook or Twitter. The more people who are aware of rare diseases, the closer we become to finding a cure.

SAVE THE DATE  
Rare Disease Day: February 28, 2014
Development Board Spring Meeting: March 18, 2014 - 10 a.m.
Amplify Austin: March 20 - 21, 2014 - 6 p.m. to 6 p.m.
Battlin' Batten in Baffin Fishing Tournament: April 4 - 6, 2014
Run to the Sun Relay: April 26 - 27, 2014 
Beyond Batten Disease Foundation
512-275-2600 or 1-877-6BATTEN
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