Batten Family Help Fund: A Pilot Program of the BDSRA 

The BDSRA understands that families in our community caring for people with Batten disease are often  faced with financial challenges that further interfere with their wellbeing. To help, we have developed a  small grant program of up to $1700 to be used in a variety of ways. 

Some examples are: 

  • Families may be facing eviction or utility shut-offs which would greatly impair their ability to care  for their Batten and sibling children. 
  • Families may need a specialized piece of equipment that is out of reach financially. Appliance repair or replacement. A new washing machine may be necessary if there is a need to  be frequently washing large amounts of bedding and clothing for someone who is incontinent. Refrigerator repair or replacement may be needed for food/formula safety.  
  • If a person with Batten is in the hospital some distance from home, we can help with the cost of  travel and meals to provide families support at this stressful time.  
  • Other immediate needs your family must fill caring for your loved one with Batten disease. 

To apply: 

Step 1: Fill out the application form (click here

Step 2: Email BDSRA at info@bdsra.org to set up a time to discuss the application 

Important things to note: 

  1. You may only receive one Batten Family Help Fund Pilot Program grant and applications are  reviewed in order of receipt. We hope to provide assistance within a 2-week period, pending  information needed from families. 
  2. For this pilot program, we can only consider helping children, young people or adults (and their  immediate families or those who care for them) living with Batten disease in the United States. 3. For BDSRA’s legal/auditing purposes, you may be asked to provide diagnosis information from  your provider, bills or other receipts or invoices, contacts with other professionals working with  your family member with Batten disease. For many requests, checks will go directly to vendors,  landlords, or companies providing goods or services. 

If you have questions or want to discuss the application process or your eligibility, please contact  info@bdsra.org or 614-973-6013.