logo  
  
A Mother's Story  
by Charlotte Benson

 

  
 
"The Blind Vest"

 

To read the full article, please click here
 
 Make a Memory,
Give a Gift
 
Check out our newest website feature: Memorials and Tributes

Make a special tribute or memorial gift honoring a loved one. Memorial gifts are a special way to remember those we have lost, and tributes are the perfect gift for birthdays, holidays and special occasions.

 
Be A Good Neighbor!

With Randall's Good Neighbor Program, you can help inspire hope and save lives in the checkout line. Link your Randall's card to BBDF and we will receive 1% of your grocery bill. Fill out this form, return it to the courtesy booth at your local Randall's and help bring us closer to a world without Batten disease.
Already have your account linked with a charity? No problem. You can list up to 3!
 
Shop and Save
LIVES!
 
Need some new running gear before you head to the starting line? If you purchase your products from Train4, they will donate 50% of the revenue to BBDF! 
This great offer isn't just for relay participants. Make a purchase anytime and you'll be supporting BBDF.
 
Featured
Fundraiser
  
A special THANK YOU to Jamey Whitlock
for hosting the 4th Annual Brake Specialists Plus HOPE Charity Golf Tournament benefitting BBDF.
  
Help us show our appreciation by bringing your vehicle to Brake Specialist Plus!
Research Update

Passion is our driver. Strategy is our compass. With your support, Beyond Batten Disease Foundation (BBDF) has developed a dynamic plan to diagnose and prevent juvenile Batten disease while at the same time investing in the most promising research to treat children and families living with the disease. Because of your help, we have made exciting progress since the foundation's inception in September 2008. 

 

  • Time magazine's Top Ten Medical Discoveries in 2012 included the blood test we co-developed to diagnose and prevent Batten and over 600 rare diseases. 
  • We are funding basic discovery to identify drug targets, translating those discoveries into treatment, and preparing for clinical trial success. 
  • We have worked closely with Batten Disease Support and Research Association and other Batten family organizations to leverage research funding. 
  • We have invested wisely and attracted additional collaborative funding from nationally recognized nonprofits, including the American Academy of Neurology, the National Multiple Sclerosis Society and the Alzheimer's Drug Discovery Foundation leading to additional investments from pharmaceutical companies, Biomarin and Shire; and government entities like the National Institutes of Health and European Research Commission. 
  • Through the foundation's extensive leadership, our efforts have resulted in additional $5 million plus in collaborative funding to further support research for a treatment and cure for Batten disease. 

 

For us, there will be only one clear measure of success: providing treatments and a cure for juvenile Batten disease. Thank you and congratulations on these accomplishments; without your support, they wouldn't have been possible. Read the full article about our research activities.

 

On your mark, get set, GO!

 

It's that time of year again! Time to lace up your running shoes, don your LED-lit hats and start the 90-mile trek through the night! On April 20-21st, BBDF will be hosting its third annual Run to the Sun Relay to raise money for Batten disease research.

 

Teams of 5 to 10 runners work together to raise $5,000 and then run through the night from Enchanted Rock State Park to Austin. The relay has 16 legs and this year, we are dedicating each leg to a child affected by Batten disease. The race comes to an end at Laguna Gloria, where there will be a sunrise celebration as we acknowledge the strength and determination of those impacted by this devastating disease. Run to the Sun is a relay unlike any other and we want YOU to be a part of it!

 

Not a runner? There are still plenty of ways to participate:   

Volunteer

BBDF is still looking for energetic and inspiring volunteers to manage and recruit others to man one of the 15 exchange stations where teammates "pass the baton" onto the next runner. The stations will provide the encouragement and inspiration our runners need to continue through the night.

 

Start a virtual team

Want to participate from afar? Register for a virtual team, so you can raise money without having to dust off the old running gear.

 

Support our runners

Help our runners reach their fundraising goals by donating to their team via their personal advocacy pages.

 

Be a sponsor

Run to the Sun relay is still in need of sponsorships for the starting line and the exchange stations. In return for their generosity, sponsors receive branding and recognition on all marketing and communication collateral, on-event signage, the Run to the Sun website, media exposure and more.

 

To learn more about the different opportunities, please visit the Run to the Sun website. However you choose to participate, we thank you for supporting our cause and joining our fight against Batten disease.

Hunt-ing for more followers

BBDF supporter and Public Relations guru and professor Jeff Hunt has recruited the help of his UT Communications students to devise and implement a much-needed social media plan for the foundation. Social media is one of the fastest growing ways to spread information and awareness in the nonprofit world and BBDF is getting on board. Please take the time to complete this online survey designed by the students. Responses are anonymous and will help them develop the best plan for BBDF. Only a few minutes of your time will provide us with the insight we need to improve our communication with all our supporters!

 

If you haven't already, be sure to "Like" us on Facebook and follow us on Twitter!

 Like us on FacebookFollow us on Twitter

Save the Date
3/24: Join us for a day of HOPE at the grand opening of Blue Mug Cafe in The Woodlands, Texas. Buy a ticket for brunch or dinner and 100% of the sale will be donated to the Will Herndon Fund!

 

4/20-21: Don't forget- the 3rd Annual Run to the Sun Relay. We hope to see you all there!

 

5/3: It's almost tee time! Mark your calendars for the 4th Annual HOPE on the Green at Woodforest Golf Club in Montgomery, Texas.