Beyond Batten Disease Foundation

And it’s November! As you consider online shopping for gifts or wine for upcoming celebrations, please consider purchasing through ONEHOPE Wine and support the Beyond Batten Disease Foundation and Wheeler’s Warriors. Please click link here: https://lnkd.in/eJ9Afayq Thank you Katherine Kennedy Allen for supporting Wheeler and the Stecker Family ??. Judy Stecker Courtney Stecker I find the mini bottles make amazing gifts. If you’re not interested in wine please note you can support the Steckers directly through their gofundme https://lnkd.in/dxNv328a. #battendisease #juvenilebattendisease #savewheeler #battlingbatten #charity #gifts #wine #onehope

Gaine Invitational 2024 is a wrap but the need continues on for Wheeler’s Warriors. Please consider contributing to https://lnkd.in/eZJBhqwi to learn more or contribute to https://lnkd.in/dxNv328a or https://lnkd.in/eY63Y4Qt (Tax-Deductible) Thank you all for your support this year. We raised nearly $21,000 to support Wheeler and the Beyond Batten Disease Foundation . Thank you Win Huffman for volunteering your time and talent to capture the day. Congrats to winners Will Cutler and Gus Montes de Oca ! Andy Corno and Brad Wilner receive commendation for a strong second place showing. Thanks to William LeBlanc for winning the 50/50 raffle and contributing it back to the cause ??????. Special appreciation to our sponsors listed below. TITLE SPONSOR - Kevin Murphy UBS PLATINUM SPONSOR - Courtney Gaine, PhD, RD GOLD SPONSOR - Bill Bray Embrace Home Loans LUNCH SPONSOR - Patrick Judge Beltway Cleaning Services BALL SPONSOR - Patrick Martin , Wet Chicken and UBS DRINK TICKET SPONSOR - Phyllis Lingeman HIGH NOON SPONSOR - Michael Ness River Hawk Consulting LLC BREAKFAST SPONSOR - Maguire Family PRACTICE GREEN SPONSOR - Jason Kressel and Family RANGE SPONSOR - Marika Meyer Hole Sponsors krista johnson Lilly H. Man-Machine Systems Assessment (MSA) Brendan Cain Samantha Cain Marisa Casey Pat Casey Urban Country Designs Ltd Maura McGowan Gordy Russ Brown Property Management, Robert Ransom Mary Christine Bray, CAMS-FCI Jack Kalavritinos Maria Burton Team Brunette for Mollly Robert Jenets Mike Nolan Mea P at Cozy Outpost Lauren Zelt Kerry Hutchison, PGA Brian McClintock Annie Starke Lange Justin Lange Tim Connolly John FitzGerald Gaine Courtney Stecker Judy Stecker

Dementia symptoms are prevalent in Batten disease and related pediatric conditions. Learn more from BBDF scientific consultant Ineka Whiteman PhD about practical management approaches to these symptoms.

Help #savewheels and grow awareness for the Beyond Batten Disease Foundation. Listen to this brief clip to understand the magnitude of this battle against #BattenDisease. Golf Tournament on Monday, October 14 - Still room for players and a handful of hole sponsors. Details here: https://lnkd.in/ed9TNwgs Courtney Stecker Judy Stecker John FitzGerald Gaine Samantha Cain krista johnson Huge thanks to our repeat sponsors and players! Brian McClintock Lauren Zelt Lilly H. Michael Ness Erin Gallagher Kevin Murphy Courtney Gaine, PhD, RD, Christopher Cuddy, Patrick Martin Justin Lange Will Lee Patrick Dowd Pat Casey Tim Connolly Gus Montes de Oca Marisa Casey Brian Schram Lauren Schram Mike Nolan Maura McGowan Gordy Richard J. Moroscak Jr. Phil Coppage Andrew Kunisch . More to come on new sponsors this year, but thank you Robert Ransom Patrick Judge Annie Starke Lange Bill Bray and Daniel Schuler to name a few. We appreciate you!

Reminder that NORD's Batten Disease Premium & Copay Patient Assistance Program is open and accepting applications for assistance. NORD’s Batten Disease Patient Assistance Program offers eligible individuals diagnosed with Batten Disease financial support to pay for out-of-pocket healthcare costs that are directly related to the care and treatment of Batten.?These?Patient Assistance Programs for individuals diagnosed with Batten disease have been expanded. Eligible individuals may now apply for financial support with health insurance premiums and copay expenses. Learn more here:

We need your help! BBDF is currently working with Engage Health to collect information from patients who are currently using off-label miglustat in consultation with their medical practitioner. Please note that taking miglustat off-label will not exclude a patient from participating in a future trial, and this data may be helpful in informing our efforts and potentially revising the study design. If your child is currently using off-label miglustat in consultation with your medical practitioner, we would be so grateful for your participation in this survey. Read more and take the survey here:

Phase 2 of the Batten disease research priority-setting process is underway, and your input is requested! Our colleagues at the BDSRA Foundation and Kennedy Krieger Institute are conducting an important 2-phase community survey to help inform and drive research priorities and investment in Batten disease. Following the Batten community’s responses in Survey 1, a summary list of research questions about Batten disease has been created. You are invited to review the summary list and select the 10 research questions you think are most important for researchers to study. This anonymous survey is open to the ENTIRE Batten community and takes 10-15 minutes to complete. The survey deadline is July 17, 2024. Take the survey here: https://buff.ly/3S3xO06

For #BattenDay2024, CGTLive followed up with Ineka Whiteman, PhD, of BDSRA Foundation, to learn about the progress and setbacks that have occurred in #BattenDisease gene therapy during the past year. Read more: https://lnkd.in/eAmnwNnK

Join us in raising awareness for Batten Disease on Batten Disease Awareness Day! Special thanks and recognition to the families working tirelessly for a treatment or cure for juvenile #Batten disease. Learn more on our website here https://buff.ly/4aUn8aw or consider donating at https://buff.ly/3Vw07Gz.

The Stecker family recently secured a Batten Disease Awareness Day proclamation in Virginia. Courtney and Judy describe their son, Wheeler, as an energetic and loving little boy who likes to play with his little brother, Read, adores being outdoors, and has a mischievous and wonderful sense of humor. ?? https://ow.ly/YQJ850Sc3Fr #BattenDay2024 #BattenAdvocatesForACure #BattenDisease #BattenAwareness