July 2023                                                                            Volume 34, Issue 7

On behalf of the BDSRA Foundation staff, the Board of Directors, and the Support Committee, THANK YOU for attending this year’s conference and welcoming us into your family. We had an incredible time with you Giving Batten the Boot in Denton, Texas!

We hope you learned something new, reunited with and made new friends, and created new memories to last a lifetime. We’re excited about the future of the BDSRA Foundation and will continue to support, provide for research, and advocate for all CLN types.

Select session recordings from this year’s Annual Family Conference are now available for registrants in the mobile conference app and the app’s web version! Access them in the “agenda” section.

Go behind the scenes of this year’s Annual Family Conference with a photo gallery produced by Ira Graham III Photography & Films!

Get a closer look at conference weekend including pet and music therapy, science and advocacy presentations, SIBs activities, the Kids Parade, the welcome and keynote addresses, Celebration of Life, and much more.

Re-live Thursday night’s Pre-Conference festivities and learn more about Dr. Erika Augustine and our Batten community with this video by Ira Graham III Photography & Films.

Stay tuned for more videos from the conference by following our social media channels!

Day 3 of the Annual Family Conference was dedicated to honoring and remembering our Batten angels, which wouldn’t have been possible without Charlie Leffler and the late Steve Thompson. Charlie couldn’t attend the conference this year, and Steve passed away on May 20.

Charlie and Steve coordinated the shipping and construction of the memorial at the conference for many years. We are grateful for Charlie and Steve because their dedication, support, advocacy, and vision have paved the way for our Batten angels to be remembered forever.

Steve and Bonnie Thompson

We’re excited about the future of BDSRA Foundation, and details of that future were unveiled during the Annual Family Conference, including:

• Batten Centers of Excellence
• Fam Funds
• $5 Fridays
• Family Register
• An online auction provided by Winspire with proceeds supporting stipends to attend Rare Disease Week

Stay tuned for further details and information in the coming weeks!

Dr. Jonathan Cooper and Dr. Ineka Whiteman explained how you can view and rate your favorite science presentations in the mobile conference app on a recent Toolbox Tuesday. The deadline to vote is the end of the day Tuesday, August 8th.

More details can be found below in Dr. Ineka Whiteman’s latest column.

The BDSRA Foundation Family Register is a confidential contact database that enables us to keep you informed of ongoing Batten disease research, including future clinical research opportunities. Watch the video on the right and read Dr. Ineka Whiteman’s latest column below for more details.

St. Louis, MO, is the host site for the 2024 BDSRA Annual Family Conference! Next year’s conference will take place from July 12-14 at the Renaissance St. Louis Airport Hotel, located at 9801 Natural Bridge Road.

We can’t wait for you to join us!

BDSRA and the SIBs program will host our virtual summer party on Wednesday, August 23rd beginning at 6 p.m. EST, featuring a story and craft!

Stay tuned for further details by following our social media channels!

The BDSRA Foundation is committed to supporting and advocating for those affected by Batten disease to raise awareness and give this community a platform to share their stories.

Sharing your story allows BDSRA to help raise awareness for all CLN types and elevate our three pillars — Support, Research, and Advocacy.

Please contact BDSRA Foundation Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org if you’re interested in sharing your story with BDSRA.

Shared your story with local media? Let us know! Email Patrick and we will share.

Do You Follow BDSRA on Social Media?

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, Twitter, and YouTube to stay in the know on all things happening in our Batten Community!

Click below to follow all of our accounts: 

Annual Family Conference 2023 – Clinical & Scientific Program Highlights

I’m delighted to share some of the highlights and key takeaways from this year’s Clinical & Scientific program. Dr. Jon Cooper, Dr. Dave Pearce, and I worked together to build a truly family-centered, interactive, and dynamic educational program this year, with a focus on in-person presentations and plenty of opportunities for discussions and questions with our guest speakers.

On Day 1, we were treated to a “Batten Disease 101” interactive session with Dr. Dave Pearce, heard many practical, take-home tips for managing behavior, cognition, and learning changes with Dr. Heather Adams; and learned about the neuroscience of stress and practical tools to avoid caregiver burnout with psychologist, physical rehab specialist, and Batten parent Dr. Joseph Vigil.

As part of this year’s program, we asked Batten disease researchers from all over the world to send in a short, snappy presentation on their team’s main research approach, their latest findings, and what the significance of these findings is for our Batten community. Teams each had three minutes and 3-4 slides to pitch their exciting work to a “lay audience,” and families have the chance to watch and vote for their favorite entries!

We had an impressive 20 entries, which can be viewed individually via the conference app and web platform below. Conference registrants, you can vote for your favorites using the 5-star rating beneath each video. The three highest-rated presentations will have their team’s research featured in The Illuminator.

Get clicking! The deadline to vote is midnight (EST) on Tuesday, August 8th.

For a summary of program updates as delivered at the 2023 Annual Family Conference, view the table or click the button below.

Neurogene and Neoleukin Therapeutics have announced an agreement to merge.

Have you joined the Register yet?

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 opportunities.

The Register also enables the BDSRA Foundation to better understand the prevalence of Batten disease, including the different subtypes and geographical locations. This helps us tailor our education and support activities according to the needs of our families.

The Register is open to all current and bereaved families.

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.

Thank you for participating in this important initiative!

At the Annual Family Conference, BDSRA Foundation President & CEO Amy Fenton Parker and Board Member Dr. David Pearce were delighted to announce that the Batten Disease Centers of Excellence program is now open and accepting applications. Health Systems and Academic Medical Centers are encouraged to apply for this designation.

For more information and to apply, click the button below.

Applications close on September 15, 2023.

Attention CLN2 and CLN3 families – ENROLLING NOW

YOU have the power to make a difference!

Significant challenges in speech, language, and communication in individuals affected by Batten disease have long been widely recognized, yet the causes and nature of these deficits remain poorly understood.

Our friends at BDSRA Australia are co-funding and partnering with Murdoch Children’s Research Institute (MCRI) in Melbourne Australia, to support a world-first research study into the characterization of speech and language in individuals with Batten disease, and YOU’RE INVITED to participate in this important research.

Participation is open to individuals worldwide who are:
– affected by CLN3 or CLN2 Batten disease
– age 6 months and older
– who are verbal or non-verbal

Bereaved caregivers are also invited to take part in this study.

To find out more about the project and how to get involved, download the flyer by clicking the button below or contacting the MCRI team at geneticsofspeech@mcri.edu.au.

The research team entered a 3-min video into this year’s Annual Family Conference “NCL Researchers Challenge” – see above (Entry No. 5, Lottie Morison).

Given the large amount of content in this month’s “conference” edition of The Illuminator, Publication Summaries for July will be combined with the August Edition!

July 2023 Facebook Fundraiser Spotlight:

Thank you for sharing and supporting our mission on social media!

In Loving Memory 

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

Ashlyn Marie Turner | June 28, 2023

Elif Akar | July 14, 2006 – July 1, 2023

Alexander Valance “Alex” Bryant | April 5, 1999 – July 17, 2023

To have your loved one’s name placed in The Illuminator please email info@bdsrafoundation.org.

Thank You BDSRA Community of Donors!

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!

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

BDSRA Foundation

PO Box 30049
Gahanna, OH 43230

(800) 448-4570 | info@bdsrafoundation.org | www.bdsrafoundation.org

View The Illuminator online