The 2023 BDSRA Foundation Impact Report will be delivered to you this week!

As the 2024 Annual Appeal gets underway, we encourage you to share the link to the button below to help us reach our fundraising goal. Keep an eye on our social media and your email for more details! 👀

It’s time for research updates! BDSRA Foundation’s Head of Research & Medical Affairs Dr. Ineka Whiteman breaks down Batten disease clinical program updates, research news & opportunities, and resources in her monthly column.

The Batten Disease Global Research Initiative opened its inaugural round in July, calling for Expressions of Interest. The number of applications we received surpassed all expectations and we were impressed with the caliber of science and innovation from applicants worldwide. This made the decisions for our Grant Review Panel extremely difficult, and we truly wish we could fund many of these projects.

Some of the topline numbers from these proposals include:

• More than 20 Expressions of Interest from 7 different countries
• Covering 7 CLN subtypes
• With a total of over $1.2 million (USD) in requested funds

Our Review Panel, composed of 4 scientists and 4 clinicians from 6 countries, has decided on the top applicants, and those researchers have now been invited to submit full research proposals which will be reviewed later this year. Grant Outcomes are expected to be announced in February 2025.

In addition to the core funding provided by BDGRI member organizations, we are still seeking other interested parties who may wish to partner on selected, subtype-specific projects, as our “GRI Funding Partners.” We are grateful to have already received interest from several potential Funding Partners including NCL-Stiftung (Germany), Beyond Batten Disease Foundation, ForeBatten Foundation, and Noah’s Hope/Hope 4 Bridget.

Together, our mission is to foster and collectively invest in the most promising research worldwide that seeks to address key research questions and areas of unmet need in Batten disease.

If you are interested in becoming a GRI Funding Partner, please reach out anytime at research@bdsraaustralia.org.

As always, thank you for your support and dedication to our shared mission.

Warm regards,

The Cardiac Neurodevelopmental Program at Boston Children’s Hospital announced the next Cardiac Neurodevelopmental Family Symposium, which will feature BDSRA Database Manager Noah Siedman!

This event brings together families and professionals from the heart defect community for a day of learning, networking, and building connections.

When: November 1-2, 2024

Where: Boston Children’s Hospital, main building and Enders building

Cost: $35 (BCH employees should email us directly for complimentary admission)

How to sign up: (Click the button below)

Tickets are limited.

Our Database Manager Noah Siedman brings you the latest information regarding the BDSRA Foundation Memorial. Please follow our social media channels and watch your email for further updates.

We apologize for the downtime and want to assure the community that all memories previously-stored are secure during this process.

We appreciate your patience and trust in us to steward this project. If you have any questions, would like to create a memorial page, or make updates to an existing one, BDSRA staff is happy to assist. Please contact Noah Siedman at noah@bdsrafoundation.org.

BDSRA President & CEO Amy Fenton Parker and Head of Research & Medical Affairs Dr. Ineka Whiteman will attend the upcoming 8th Translational Research Conference for the Management of NCLs in Chicago.

The Batten Disease Clinical Centers of Excellence will have a meeting prior to the conference on Wednesday, November 20.

Stay tuned for updates from this conference on our social media channels and your email.

Our Noah Siedman joined the Rare Siblings panel at last month’s Global Genes RARE Advocacy Summit in Kansas City.

Click the button below to watch the full panel discussion!

A frightening fun time! 🎃 Thank you to everyone who attended Sunday’s virtual Boo Bash as well as Our Promise To Nicholas Foundation, who makes these parties possible. We hope you enjoyed family time with fellow members of the Batten community and our staff! 🧡

Select presentations from the 2024 Annual Family Conference in St. Louis, including the newly-added Behavior, Cognition & Learning session, are available on our YouTube channel!

Other recordings include the Science & Research session, Celebration of Life, Dinner Dance announcements, financial sessions, caregiver support presentations, and much more!

“Uplifting Experiences can take on many different forms, but the top priority is always harnessing the power of sport to inspire hope and joy in the lives of people impacted by rare diseases.

The objective of each event is to provide an opportunity for members of the local rare disease community and athletes to connect. Uplifting Experiences is centered on affording people impacted by rare diseases a unique and memorable experience, while simultaneously allowing athletes to directly connect with the people impacted by a cause they support.”

Click the button below to view the Uplifting Experiences upcoming events list to learn more and register.

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.

As part of our Life Goes On program for bereaved Batten parents, BDSRA will hold its next virtual Grief Chat on Sunday, December 15 at 7 p.m. EDT.

Grief during the holiday season will be the focus of this session. If you’ve already completed the Grief Chat form, you will receive multiple email reminders before the chat.

These Grief Chats are an opportunity for bereaved Batten parents to gather and support each other no matter where they are on their grief journey.

If you haven’t attended a Grief Chat this year, please click the button below to register.

Want to see more content from BDSRA? Don’t miss out on upcoming events, information, campaigns, and community posts! Follow BDSRA on Facebook, Instagram, LinkedIn, X, and YouTube to stay in the know on all things happening in our Batten Community!

Click below to follow all of our accounts: 

Together, we remember those we have lost to Batten disease. We work daily to build a brighter future for families in their honor and memory.

Claire Celje Gortnar | March 27, 2015 — October 18, 2024

To have your loved one’s name placed in The Illuminator and read at the Celebration of Life at the Annual Family Conference, please email patrick@bdsrafoundation.org.

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.

BDSRA is grateful for all gifts that support the mission; however, restricted gifts require more time and attention to administer. At its July 11, 2024, meeting, the BDSRA Foundation Board of Directors voted to implement a management fee of 7% on restricted gifts effective August 1, 2024. Please contact President & CEO Amy Fenton Parker with any questions at amy@bdsrafoundation.org.

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. 

Designed to give our community control over their stories, fundraising, and donations, our Fam Funds participation is growing!

• Tell your story
• Raise funds for BDSRA
• Choose where donations are directed
• Share with your community

We connect your donation to Support, Research, and Advocacy for families of all CLN types.