Support Brothers With Batten’s

What Your Support Makes Possible

Supporting Families

We provide connection, resources, and community for families affected by Batten disease across New England. No family should face this journey without support.

Supporting SIBS

We help siblings attend the annual Batten Disease Family Conference so they can connect with others who understand their world. SIBS leave feeling seen, supported, and less alone.

Center of Excellence

We strengthen the care families receive by supporting the New England Center of Excellence for Batten Disease — a place where families can access coordinated, compassionate, specialized care.

FAQs

  • Yes. Brothers With Batten’s, Inc. is a registered nonprofit organization. Our 501(c)(3) approval is in progress, and all donations will be retroactively tax‑deductible to our official formation date once the IRS finalizes our status.

  • Stripe donations automatically generate an email receipt. PayPal provides a receipt if you are logged in or enter an email during checkout. Venmo provides an in‑app payment confirmation, and we will send a formal acknowledgment once our 501(c)(3) status is finalized.

  • Yes. Please use the “Contact Us” button to coordinate cash or check donations.

  • Yes. Our Stripe donation form allows you to choose a monthly giving option.

  • Your gift supports siblings and families affected by Batten disease, strengthens our community programs, and helps us build a Center of Excellence at Boston Children’s Hospital.

  • Yes. You can include a dedication in the notes section during checkout.

Ways You Can Get Involved

  • Donate
    Every contribution strengthens our work and supports families across New England.

  • Share Our Mission
    Help us reach more families by spreading awareness on social media or in your community.

  • Attend Our Events
    Join us at the Clam Boil and future gatherings that bring our community together.

  • Volunteer
    Offer your time, skills, or support to help us grow and serve more families.

  • Become a Monthly Donor
    Provide steady support that helps us plan for the families we serve.

  • Sponsor an Event
    Partner with us to make our community events possible.

Voices From the Batten Community

 

“Every donation, every dollar of your support is so valuable.”

— Amanda B., Batten Mom

 

“Getting support means a whole lot to me and my family.”

— Kelley M., Batten SIB

“It means the world to us that you're giving our babies a chance.”

— Tania L., Batten Mom

 

“Every time someone is raising money, it gives us hope that there are a lot of people who really care.”

— Sam L., Batten Dad

“My sister was diagnosed seven years ago… and it has made such a difference in her life.”

— Aricin W., Batten SIB

 

“I’ve had more years with my brother than we ever expected.”

— Dahlia D., Batten SIB

“Families struggle with so many unknowns… support gives us a path forward.”

— Noah S., BDSRA Staff

 

“We have an unbelievable community… truly committed.”

— Dr. Ineka W.

“The money you help raise will ultimately go to helping kids like my brother and sister.”

— Maeve P., Batten SIB

 

“It provides hope.”

— Dr. David P.

“There’s not a lot of support for families… any amount you give helps.”

— Melissa P., Researcher

 

“Thank you so much for your donations. We really appreciate it.”

— Jenna S., Researcher