May 2020                                                                                        Volume 31, Issue 5

Registration for the BDSRA 2020 Virtual Family Conference is live!

Visit to register for the conference 

Updates and additional information will be available on the website and our BDSRA Annual Family Conference Facebook page
BDSRA Board Corner: A letter from the BDSRA Board President

Community of Kindness: Super Sam

Many of the Batten families give back to their community in wonderful ways. Here is a story about the Engman family, and how they share joy.

A few years ago, an idea was born to send care packages to other Batten affected families to share hope, love and smiles. After seeing someone create homemade sensory Easter eggs and realizing most families don't receive anything for Easter, our family decided that Easter was the perfect time of the year to send hope to other families. We have sent out about 20 to 40 packages a year for the past few years to other families fighting this disease. We include Sensory eggs and other sensory toys for the affected and their siblings. Our family cannot do this project alone, but Team Super Sam donates toys, candy, eggs, music and sensory items. Team Super Sam consists of family, church friends, community friends, and various organizations that have fallen in love with our Sam. Sam is our 8 year old who has CLN1 and lives in Katy, Texas. He loves his 2 younger brothers, swinging, music, and the beach. God has blessed our family beyond measure, and this is one way we can be a blessing to other families fighting the same battle.
BDSRA Memorial Information Request

We were touched by your response to the new Memorial, and want to gather as much information as we can for the conference in July.  

As many of you know, this Memorial has the capability to tell a story and share pictures.  Please click  here to share the story of your loved one.  If you completed this form previously, please do so again as this collects even more information than before.  

All responses must be submitted by June 15th. 

Visit our  website to read more about the Memorial.  If you have any questions please contact Tracy Kirby at 614.973.6013 or

NIH Rare Disease Patient Survey
B DSRA is hosting a virtual 5K for International Batten Awareness Day! 
You can learn more and register  here!

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! You can visit each fundraiser by clicking on the names above. 

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.

Alexander Christopher Sand
6/10/1993 - 4/23/2020 
Son of Sean and Theresa Sand
Wasilla AK

Batten Disease Support and Research Association | (614) 973-6013 | i | w