March 2021 Volume 32, Issue 3
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BDSRA says goodbye to Noreen Murphy.
Today marks the end of a special era at BDSRA. After 6+ years of dedicated service, Noreen Murphy has shared her plans to take on a new adventure. We are so excited for the opportunities that lie ahead for her, and we are sad to lose her, as she has meant so much to our families and our team. Noreen took the part-time job she was offered so long ago and helped BDSRA grow into the organization it is today.
Having Noreen by my side these last three months as the new Executive Director has truly been a gift to me. Her knowledge of our families and the Batten Community at large is distinct. She has helped to set us all up for further success in support, research, and advocacy. I have enjoyed getting to know her, and I will continue to support her career growth in any way I can. March 30th is her last day with us, so we invite you to join us in celebrating Noreen and wishing her well. Below is a note from Noreen.
"To the incredible Batten community,
I wanted to take a moment to thank you for welcoming me so warmly into this family 6 ½ years ago. I am so proud of the things we have accomplished and the memories we have made. The Batten community now has an approved treatment and I feel confident many more are on the way. We have connected with families around the world, so no one has to be on this journey alone. Every year we have grown leaps and bounds and that has been so exciting to be a part of!
As I head out on a new adventure, I am excited to watch as this community continues to make strides in research, in finding new ways to support one another, and in raising awareness around Batten and other rare diseases.
With Love and Hope,
Noreen "
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Resource Corner: Rare Disease Week on Capital Hill
Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. While we had hoped to host this event in-person, for the safety of all advocates, Rare Disease Week will be going virtual for 2021.
Virtual Rare Disease Week on Capitol Hill 2021 will be held July 14th through July 22nd and will include the same opportunities as in-person Rare Disease Week, plus more!
Registration will open on April 21st. https://everylifefoundation.org/rare-advocates/rare-disease-week/
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Upcoming Events for Batten Families
Research Updates
A friendly reminder to join us on May 10 from 10am – 2pm ET for a workshop on the Patient Advocates’ Role in Advancing Gene Therapy taking place before the ASGCT Annual Meeting. We are excited to offer two discount options on the registration fee:
Waived Registration Fee for individuals with a rare disease, caregivers of a person with a rare disease, and volunteer advocates. Learn more!
Reduced Rate for Patient Advocates by selecting that you are patient advocate when registering you can attend for only $25.
Natural History Study enrolling virtually now, until it’s safe for families to travel.
https://clinicaltrials.gov/ct2/show/NCT03822650?cond=cln5&draw=2&rank=1
Caregiver Focus Groups for CLN5
Dates will be determined by the families’ availability. View article here.
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This month we have new Facebook fundraisers organized by:
- Misti Brittingham
- Autumn Brooks
- Tammy Cummins
- Rhonda Dawson
- Steven Hagen
- Edward Harriman
- Brenda Lindly
- David E. Mac Morran
- Marcie Minter
- Melinda Vance Perry
- Allen Severance
- Hilari Stahle
- Stephanie Whaley
- Jennifer Thrasher Wiseman
We are so excited each day to log in and see the list of your names growing. Thank you for sharing and supporting our mission on social media! You can visit each fundraiser by clicking on the names above.
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In Loving Memory
Remember with us those we have lost to Batten disease. It's in their honor and memory that we work every day to build a brighter future for families.
Brandon Hawkins
07/26/97-03/01/21
Krysten Sowell
03/18/87-03/22/21
Warner den Hertog
10/09/99- 08/05/20
To have your loved one's name placed in the Illuminator please reach out to Morgan at mdeboth@bdsra.org.
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Thank You BDSRA Community of Donors!
Thank you to the donors last month who gave so generously to honor and in memory of loved ones and our community as a whole. We want to acknowledge you for your contributions. They allow us to keep serving families and advancing the science of a meaningful treatment. Your dollars and support have helped create the leading patient organization in the Batten disease community, and we are dedicated to continue that legacy of children and families
You can view recent donations to BDSRA here.
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Your gift makes all the difference in the lives of families.
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Batten Disease Support and Research Association
(614) 973-6013 | info@bdsra.org | www.bdsra.org
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