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BDSRA Foundation
Приєднався 30 чер 2020
The Batten Disease Support, Research, and Advocacy Foundation is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. Founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA is now the largest support and research organization dedicated to Batten disease in North America. BDSRA believes that to effectively unravel the mysteries of Batten disease, the worlds of medical science, research, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease.
An EXCITING Future for Batten Disease Research
We can’t discover treatments and cures for Batten disease without research. And thanks to the Batten Disease Global Research Initiative and research grants, we are taking another step toward a world without Batten. Invest in our mission and join the fight today: web.charityengine.net/Default.aspx?tsid=31106
#BattenAdvocatesForACure #Research #BattenDisease #AnnualAppeal #Giving #Donate #Impact #RareDisease #AnnualAppeal
Visit our website: bdsrafoundation.org/
Upcoming events and latest news: linktr.ee/bdsra
How to help: bdsrafoundation.org/bdsra-advocacy/funding-our-mission/
#BattenAdvocatesForACure #Research #BattenDisease #AnnualAppeal #Giving #Donate #Impact #RareDisease #AnnualAppeal
Visit our website: bdsrafoundation.org/
Upcoming events and latest news: linktr.ee/bdsra
How to help: bdsrafoundation.org/bdsra-advocacy/funding-our-mission/
Переглядів: 16
Відео
Your Gift to BDSRA Can Be a Game-Changer
Переглядів 6121 день тому
A family’s journey through Batten disease is uncharted from diagnosis to bereavement. The BDSRA Foundation helps families navigate it through supplies and resources made possible by donations. Your gift to BDSRA can be a game-changer for a family today: web.charityengine.net/Default.aspx?tsid=31106 #BattenAdvocatesForACure #Support #BattenDisease #AnnualAppeal #Giving #Donate #Impact #RareDisea...
Your Gifts to BDSRA Provide Critical Support
Переглядів 4421 день тому
Caring for a Batten patient is demanding in every possible way - physically, mentally, and emotionally. The BDSRA Foundation provides Batten families with critical support. Your gifts make that possible. Make a difference for Batten families in need today: web.charityengine.net/Default.aspx?tsid=31106 #BattenAdvocatesForACure #Support #BattenDisease #AnnualAppeal #Giving #Donate #Impact #RareDi...
Your Gifts To BDSRA Provide A Community For Batten Families
Переглядів 28Місяць тому
The Annual Family Conference provided Batten father Joe Vigil a safe space alongside fellow Batten families. Your gifts to BDSRA ensure the Batten community continues to feel at home at the BDSRA Annual Family Conference with others who understand what it’s like living with Batten disease: web.charityengine.net/Default.aspx?tsid=31106 #BattenAdvocatesForACure #BattenDisease #Fundraising #Suppor...
How Your Gifts Impact the BDSRA Annual Family Conference
Переглядів 57Місяць тому
The BDSRA Annual Family Conference is a staple with our Batten disease community made possible by our donors. By giving to BDSRA, you help ensure this yearly tradition and the positive impact it has on families, SIBs, bereaved parents, researchers, clinicians, and staff continues. #BattenAdvocatesForACure #BattenDisease #Fundraising #Support #Research #Advocacy #RareDisease Donate: web.charitye...
Behavior, Cognition & Learning | 2024 BDSRA Annual Family Conference
Переглядів 1592 місяці тому
Dr. Charles Albright, Dr. Andrea Miele, Dr. Kourtney Santucci, Dr. Jessica Scherr, and Batten mothers Bekah Bowman and Beth Fries present Behavior, Cognition & Learning on July 13 at the 2024 BDSRA Annual Family Conference in St. Louis. #battendisease #battenadvocatesforacure #rarediseases #science #clinicaltrials #research #stlouis #conference Donate: web.charityengine.net/Main-Donation-Form V...
BDSRA MEMORIAL UPDATE
Переглядів 252 місяці тому
Our Database Manager Noah Siedman brings you the latest information regarding the BDSRA Foundation Memorial. Please follow our social media channels and sign up for our email list for further updates: ow.ly/IkGG50TL30M #BattenAdvocatesForACure #BattenDisease #Memorial #RareDisease #Legacy Donate: web.charityengine.net/Main-Donation-Form Visit our website: bdsrafoundation.org/ Upcoming events an...
Batten Disease | Global Genes RARE Advocacy Summit Summary
Переглядів 123 місяці тому
BDSRA Database Manager Noah Siedman attended the Global Genes RARE Advocacy Summit and served on the Rare Siblings panel. Noah will have a full report on what he learned from this event in our newsletter, The Illuminator. Thank you Noah for representing the Batten community and BDSRA! #BattenAdvocatesForACure #WeekInRARE #RAREAdvocacySummit #battendisease #raredisease #panel #globalgenes Donate...
Toolbox Tuesday | Newborn Screening & Batten Disease
Переглядів 173 місяці тому
The current relationship between Batten disease, the Recommended Uniform Screening Panel (RUSP), and newborn screening can be difficult to understand. The video above breaks down these concepts and what they mean to the Batten community. Learn more: ow.ly/R2sf50TtLgw Donate: web.charityengine.net/Main-Donation-Form Visit our website: bdsrafoundation.org/ Upcoming events and latest news: linktr....
Your Gifts To BDSRA Make A Real Difference
Переглядів 1133 місяці тому
Your gifts to BDSRA make a real difference for our Batten families. Thanks to generous donors, 49 people from 16 different Batten families could attend this year’s Annual Family Conference in St. Louis this past July. From the bottom of our hearts, thank you! 💚 #giving #conference #rare #battendisease #raredisease #donate #stlouis #bdsra #battenadvocatesforacure Donate: web.charityengine.net/Ma...
Here are the facts about Newborn Screening
Переглядів 113 місяці тому
Let’s learn more about Newborn Screening! Visit the EveryLife Foundation for Rare Diseases website to learn more about #NewbornScreeningAwareness Month: ow.ly/S1Fi50TfBSQ #BattenAdvocatesForACure #newbornscreening #awareness #rusp #battendisease #raredisease Donate: web.charityengine.net/Main-Donation-Form Visit our website: bdsrafoundation.org/ Upcoming events and latest news: linktr.ee/bdsra ...
Batten Disease Science & Research Session | 2024 BDSRA Annual Family Conference
Переглядів 1544 місяці тому
Dr. Ineka Whiteman, Dr. Jonathan Cooper, Dr. David Pearce, and Dr. Tom Wishart lead the opening session at the 2024 BDSRA Annual Family Conference on July 12, which covers all the Batten disease science, research, and clinical trials. #battendisease #battenadvocatesforacure #rarediseases #science #clinicaltrials #research #stlouis #conference Donate: web.charityengine.net/Main-Donation-Form Vis...
Case Management 101 with Dr. Joseph Vigil | 2024 BDSRA Annual Family Conference
Переглядів 164 місяці тому
Case Management 101 with Dr. Joseph Vigil | 2024 BDSRA Annual Family Conference
Palliative Care: Debunking the Stigmas | 2024 BDSRA Annual Family Conference
Переглядів 364 місяці тому
Palliative Care: Debunking the Stigmas | 2024 BDSRA Annual Family Conference
How to Develop A Life Plan For Your Child With Disabilities | 2024 BDSRA Annual Family Conference
Переглядів 104 місяці тому
How to Develop A Life Plan For Your Child With Disabilities | 2024 BDSRA Annual Family Conference
ABLE Accounts vs. Special Needs Trusts: An In-Depth Discussion | 2024 BDSRA Annual Family Conference
Переглядів 184 місяці тому
ABLE Accounts vs. Special Needs Trusts: An In-Depth Discussion | 2024 BDSRA Annual Family Conference
Managing Caregiving Stress/Burnout with Dr. Joseph Vigil | 2024 BDSRA Annual Family Conference
Переглядів 134 місяці тому
Managing Caregiving Stress/Burnout with Dr. Joseph Vigil | 2024 BDSRA Annual Family Conference
Dinner Dance: IMPORTANT Batten Disease & BDSRA Announcements | 2024 BDSRA Annual Family Conference
Переглядів 524 місяці тому
Dinner Dance: IMPORTANT Batten Disease & BDSRA Announcements | 2024 BDSRA Annual Family Conference
MAJOR Batten Disease Clinical News | Hear from BDSRA's Dr. Ineka Whiteman
Переглядів 864 місяці тому
MAJOR Batten Disease Clinical News | Hear from BDSRA's Dr. Ineka Whiteman
TUTORIAL | 2024 Annual Family Conference App
Переглядів 616 місяців тому
TUTORIAL | 2024 Annual Family Conference App
TUTORIAL | Batten Disease Awareness Day Advocacy Module
Переглядів 267 місяців тому
TUTORIAL | Batten Disease Awareness Day Advocacy Module
Batten Disease | RARE Drug Development Symposium Summary
Переглядів 228 місяців тому
Batten Disease | RARE Drug Development Symposium Summary
Meet The Winner of the 2024 International Batten Disease Awareness Day T-Shirt Design Contest
Переглядів 488 місяців тому
Meet The Winner of the 2024 International Batten Disease Awareness Day T-Shirt Design Contest
TUTORIAL | 2024 International Batten Disease Awareness Day Fundraising
Переглядів 1198 місяців тому
TUTORIAL | 2024 International Batten Disease Awareness Day Fundraising
Batten Disease | Rare Disease Day at FDA & Industry Partner Meeting Summary
Переглядів 4210 місяців тому
Batten Disease | Rare Disease Day at FDA & Industry Partner Meeting Summary
TUTORIAL | Advocate for the Batten Disease Community During Rare Disease Week
Переглядів 31510 місяців тому
TUTORIAL | Advocate for the Batten Disease Community During Rare Disease Week
TUTORIAL | NEW Grief Chat Sign-Up Form
Переглядів 2011 місяців тому
TUTORIAL | NEW Grief Chat Sign-Up Form
Important Information For Batten Disease Families | Family Register
Переглядів 6911 місяців тому
Important Information For Batten Disease Families | Family Register
My One-Word Batten Disease Journey | John & Carol Patterson
Переглядів 230Рік тому
My One-Word Batten Disease Journey | John & Carol Patterson
"promosm"
🙏🙏🙏🙏🙏
Such a beautiful gift- God bless there hearts !!
Great informative video regarding the topic of Anticipatory Grief and Changing Baselines. Our family is in the thick of this now. Our 9 year old son has CLN2 Batten Disease.