October 2025                                                           Volume 36, Issue 10

Annual Appeal is Upon Us

The fourth quarter is upon us, and for most nonprofit organizations, this means the annual appeal. The BDSRA Foundation is no different, and we need your help.

This year has been a financial challenge for BDSRA. We want to continue to offer the trusted Batten-specific resources we’ve started.

• Host expert virtual programming
• Provide financial support for families
• Deliver a family conference packed with content
• Fund the best research around the globe
• Supply advocacy resources for every state and the nation

To plan and manage these offerings, we need the team, and we would be grateful if you could advocate for BDSRA. Whether you like, share, or comment on our social media, send emails to your friends or family, or promote BDSRA through your Fam Fund, we will accept the gift of your help!

Anyone can donate here, but stay tuned for more ways to get involved!

We need your input! The 2025 Community Needs Assessment Survey is available now! The goal of this survey is to explore the needs of Batten families living around the world. Click below to read the full guidelines and to complete the survey. 

Batten disease was featured in a recent Law & Order episode titled “White Lies.” The scene that first mentions Batten disease begins at the 28:38 mark. This episode is part of Season 25 of the show, Episode 3, and is available to stream on Peacock. 

• Our 2024 Impact Report is out! 
• President & CEO Amy Fenton Parker attended the 2025 NORD Breakthrough Summit. Read her summary here. 

Tern Therapeutics recently announced the opening of a new clinical trial site for TTX-381 at Universitätsklinikum Hamburg Eppendorf (UKE) in Hamburg, Germany. Read the press release below for more details. 

In case you missed it, publication of Dr. Ineka Whiteman’s research columns is switching from a monthly to a quarterly schedule. Her next column will be published this December. 

Click below to read the letter BDSRA signed on to during October:

• Ad Hoc Group for Medical Research’s letter to the Committee on Appropriations urging the finalization of the fiscal year (FY) 2026 Labor, Health and Human Services, Education, and Related Agencies (Labor-HHS) spending bill with a robust investment in the NIH

The BDSRA Foundation Family Register is a vital tool that enables us to keep you informed of ongoing Batten disease research, including future clinical research and natural history opportunities.

The information collected in this form is kept STRICTLY CONFIDENTIAL. Your involvement in this survey is entirely voluntary, and you may request to be removed from the list at any time. The form takes just a few minutes to complete and can be accessed by clicking the button below.

Federal law sets 73 as the starting age for required minimum distributions (RMDs). Donors have until April 1 of the year after they turn 73 to take their first distribution. After that, the annual deadline is December 31.

2025 Annual Limits

• Individuals can donate up to $108,000 per year.
• Married Couples: Each spouse can donate up to the limit, allowing a total of $216,000.

New Reporting Requirements

• Form 1099-R: Starting in 2025, IRA custodians must use Code Y in Box 7 of Form 1099-R to identify QCDs. This change aims to simplify the reporting process and ensure accurate tax treatment.

Eligible Charitable Organizations

• QCDs must be made directly to qualified charities like the BDSRA Foundation. Contact your IRA custodian now to ensure that your QCD process is completed by year’s end.

Tax Implications

• QCDs are not tax-deductible, but the amount donated is excluded from taxable income, potentially lowering your tax burden. Always consult your tax advisor about eligibility.

These updates enhance the flexibility and benefits of using QCDs for charitable giving to BDSRA, especially for retirees managing their RMDs.

Please contact your IRA custodian to initiate your 2025 QCD process now.

If you have any questions or need additional information, please contact Amy Fenton Parker by emailing Amy@bdsrafoundation.org or calling 614-937-6011 today. 

Are you planning a birthday fundraiser for BDSRA soon? We are here to help!

BDSRA can make a custom link and QR code for you to create a birthday fundraiser that directly comes to us! Creating a Fam Fund is another great way to raise funds in celebration of your birthday, and we can do all the legwork for you. 

If you are interested in setting up a Fam Fund for a birthday fundraiser or a stand-alone birthday fundraiser this year, please contact Heather Dainiak at heather@BDSRAfoundation.org to get started.

Thank you for investing in our mission. We exist to provide support, research, and advocacy for families with all forms of Batten disease. We want to acknowledge the donors who gave so generously last month to our work.

Together, we are Batten Advocates for a Cure.

To view the list of recent donors, please click the button below!

From copy paper to personnel, $5 Fridays is designed to keep the office moving. The more $5 Friday donations BDSRA Foundation receives for operations, the more money BDSRA can invest in programs, research, and advocacy.

That’s the power of FIVE.