Annual Family Conference Grant Application

Thanks to forward-thinking, generous donors who lost their children to Batten disease, each year there is a limited amount of grant funding available for families based in the United States who need assistance to attend the BDSRA Annual Family Conference. Priority is given to families who have not received funding in the past for the conference, new families, and those who have been unable to attend for several years due to financial stress.

Grants include the price of registration, one room for up to three nights, and meals on Friday and Saturday of the conference. Attendees are responsible for their travel expenses.

WHO IS ELIGIBLE?

U.S. families actively caring for a loved one(s) with Batten disease or bereaved Batten families are eligible. Family is defined as these immediate members: mother, father, guardian/primary care provider, and siblings.

Adult T-shirts and SIBs guest(s) T-shirts and activities are not included but can be ordered and paid for via the online registration system.

Please complete the form, sign it below, and submit it by Sunday, May 17th.

The 2026 BDSRA Annual Family Conference will take place in Chicago, Illinois, from July 10-12. The conference brings together Batten families, researchers, and clinicians from across the country and globe for a weekend featuring research and advocacy presentations, support sessions, activities for affected patients, siblings, and bereaved parents, and much more. Free childcare is provided.

Contact Information

First Name

Last Name

Email Address

Phone Number

Street Address

City

State

Zip code

Country

Grant Application Questions

How many Family Conferences have you attended?

How many meals will you need for Friday lunch?

How many meals will you need for Saturday lunch?

How many meals will you need for Saturday dinner?

Will you need childcare?

Tell us about yourself, and why you would like to attend Family Conference.

Release/Disclaimer

By checking the box below I understand and affirm that I am responsible for travel to and from the 2026 Annual Family Conference.I understand.

I/We understand that Family Conference grants will be paid by BDSRA directly to the hotel for room and meals. I understand that a credit card may be required to pay for incidentals charged to the room, and I am responsible for payment of these incidentals. I understand that the grant covers only one room for three nights, and I am responsible for any room nights above and beyond this maximum. I understand that all meals offered at the conference will be covered entirely by BDSRA but that I am responsible for meal costs not offered at the conference. I understand that travel expenses are covered solely by me, and BDSRA does not provide funding for travel expenses to and from the conference. I understand that I am responsible for room reservations and cancellations. Any cancellation charges beyond the deadline will be my responsibility, and BDSRA will not reimburse meals or rooms charged.

I acknowledge that I have read and agree to be bound by all terms and conditions of the application. I acknowledge that failure to comply with the terms of the application and agreement may jeopardize future funding, as BDSRA will review and confirm my past compliance with the requirements prior to approving future funding. I accept and assume full responsibility for the terms as set forth in the application by providing a signature. I agree to defend, indemnify, and hold BDSRA and its members, board, agents, employees, and affiliates harmless from all claims, demands, and expenses, including reasonable attorneys' fees, arising out of the acts, errors, omissions, and/or negligence of my family and myself and/or my agents resulting in whole or in part directly or indirectly from activities under this agreement.

This agreement will be construed in accordance with the laws of the state of Ohio. I attest that the information provided is true to the best of my knowledge, and I agree to these.

Print your name below to confirm you have read and agree to the above.

Please email noah@bdsrafoundation.org with any questions.