May 2019                                                                                        Volume 30, Issue 5
BDSRA Memorial

As you may know, BDSRA is creating a new Memorial to replace the beloved one that was built in 2004. The original Memorial was created by a group of families who had lost someone to Batten Disease and provided a place for families to visit during the Annual Conference, a legacy of those we have loved and lost. Now, at over 500 names, it has outgrown our ability to keep up, and we are launching a new Memorial to take its place. While the old Memorial is deeply cherished, the new one will provide a living legacy - and the ability to grow as needed. The committee charged with creating this new Memorial is made up of families who were involved in the creation of the original one.

Key features of the new Memorial include:
  • Interactive touchscreen interface - the ability to search for a specific name
  • A profile for each name that includes a story, family information, and photo
  • Features the custom stained glass from the original Memorial
  • Future phases include the ability to add/view information through the internet/social media

We are working diligently to have this ready for the July Annual Conference in Denver - but we need your help. The total cost for a new Memorial is $85,000. Rather than have BDSRA divert those funds from vitally needed programs, we are reaching out to you directly to see if you can make a donation. Every amount will help.

To make your gift, please click here.
Resource Corner: Vacation Travel Tips

Summer is here! For some this is the best time of year for vacations. Below are some tips for travelling with medically fragile children. Our Batten families are experts on travelling as a family but the below resource can serve as a good reminder. If you have any additional tips you'd like us to share with other Batten families send them to 

13 Sanity-Saving tips for Traveling with Disabled Children by A Day in Your Shoes This guide includes general advice about contacting your physician, your insurance, and planning for all possible out comes. 

A Family's Adventures and Ideas for Travel with a Kid Who is Medically Complex by Complex Child This guide is written by a mother of a medically complex child and includes her personal experiences over the years. 

The Dos and Dont's of Traveling with a Medically Fragile Child by EPIC Health Services 

Special Needs Travel in Florida by Visit Florida As the nation's top travel destination, Florida has extensive resources for travelers with special needs.

Wish Fulfillment Organizations by Nancy's List Family vacations are never cheap particularly for families with medically fragile children. Wish fulfillment organizations offer the opportunity for families to go on their dream trips. This list includes organizations with varying eligibility requirements and limitations but some may be worth considering. 
International Batten Awareness Day!

Be sure to like and follow the International Batten Awareness Day page to stay up to date!

Batten Community Highlight

We are excited to share the following International Batten Awareness Day story from Judy Doyle at Abeona Theraputics! 

For #BattenDay2018 the entire team at Abeona Therapeutics (Cleveland, New York and Madrid) decided to #MakeYourMark for Batten Disease Awareness by transforming their individual thumbprints into fun characters.  The stories that inspired the characters are as creative as the drawings.  Just to share a few,  Eric in regulatory asked if he could draw a dolphin because it was his spirit animal, Matt in product development, all 6'9" of him is the very sweet red heart in the lower right corner, and Veronica, in manufacturing, sees herself as a big green dinosaur who is trying to eat our smiley little scientist Patrick.   Each character was added to the Cleveland office backdrop creating this fun poster.  We displayed the poster at our table at the BDSRA Family Conference in Nashville. 
The staff had such fun making the poster that they wanted to do more.  We packed up our art supplies and set up shop collecting as many children, parents and siblings that we could for colorful thumbprints along with a fun fact about that person.  It was our honor to use a few parent provided prints, to represent their children who they had lost to Batten.  Once back in Cleveland the staff went to work, channeling their creativity to make a second poster.
As #BattenDay2019 approaches we are ready to unveil the latest creation.  We #MakeYourMark this time by using a playground backdrop.  Thumbprints big and small were transformed into minions, bunnies, a pile of cute puppies, football players, super heroes and wrestlers.  These posters hang in our offices in Cleveland and Spain reminding us of the importance of the work and need to keep making a mark!

International Batten Awareness Day Virtual 5K 

Join us as we celebrate families around the world and raise money for research! BDSRA is hosting the 2019 International Batten Disease Awareness Day Virtual 5K on June 9th, 2019.

Click here to read more about the virtual 5k and  register for the event.

BDSRA Annual Conference Updates

Thank you to our early sponsors: Beyond Batten Disease Foundation, BDSRA NY/NJ Chapter, Brian and Evan Callan, Collaborations Pharmaceuticals, Garret the Grand, Noah's Hope/Hope 4 Bridget, Our Promise to Nicholas, Rare Patient Voice, REGENXBIO, and Zekelman Industries.

Conference sponsorships are still available! Visit here to download the application form. 

Recent Fundraising Events

This month we have new Facebook fundraisers organized by:

We are so excited each day to log in and see the list of your names growing. Thank you for sharing and supporting our mission on social media!

In Loving Memory 

Remember with us those we have lost to Batten disease.  It's in their honor and memory that we work every day to build a brighter future for families.

Thank You BDSRA Community of Donors! 

Thank you to the donors last month who gave so generously to honor and in memory of loved ones and our community as a whole. We want to acknowledge you for your contributions. They allow us to keep serving families and advancing the science of a meaningful treatment. Your dollars and support have helped create the leading patient organization in the Batten disease community, and we are dedicated to continue that legacy of children and families. 

View recent donor gifts
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