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February 2020 Volume 31, Issue 2
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New Board Members
BDSRA board elections took place the end of 2019 and we would like to welcome our new board members, Barb McDonough and John Ireland. They join the following returning BDSRA board members:
Darlene Royalty, President Mike Collins
Barbara Wuebbels, RN,MS, Vice-President Tony Ferrandino
Donna Fogle, Secretary Kate Haller
Robert Jensen, Treasurer Trent Lewis
Brock Benroth David Pearce, PhD
As a mother of son (Christopher 1985-2014) diagnosed with CLN3 (Juvenile Type Batten Disease), I am committed
to the continued fight against Batten disease as a legacy to Christopher and to the purpose of his life.
And as a mother to a sibling of an affected child,
I also would like to use my experience and knowledge to help support the SIBs and their families as they face the struggles of similar journeys.
After twenty plus years of facilitating for the SIBs program I decided to pass the torch to make room for younger sibs to take on the task. Joining the board will give me the opportunity to continue to serve the organization while advocating for the views and interests of the SIBs. Outside of the organization I am an avid cyclist who works in tech as a hardware designer and dabbles in real estate. I grew up in Colorado and for the
past six years I have called the San Francisco Bay area home.
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Absolutely Incredible Kid Day!
Aren't our kids just absolutely incredible? We think so! This March 19 is Absolutely Incredible Kid Day, a national holiday created by the Camp Fire organization. This day is celebrated by writing letters to the special children in our lives telling them just how amazing they are, and we think it would be a great way to take a little time to share some love and positivity with our kids this year.
On Thursday, March 19, we will encourage you to post letters to or about the absolutely incredible kids in your life on social media and to share it with them and the world alike. Let's see who can cause the most and biggest smiles! #AIKD #KidDay #BDSRA
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BDSRA is now accepting letters of intent for 2020!
The Batten Disease Support and Research Association (BDSRA) has issued a request for letters of intent (RLOI) for the 2020 research grant cycle. BDSRA supports scientific investigations through an annual merit review process, awarding grants to researchers throughout the world.
For the current call for LOIs, BDSRA seeks innovative research projects that have the potential to advance therapeutic strategies for all or any of the Neuronal Ceroid Lipofuscinoses. Each award, depending on funding availability, will be no more than $40,000 for a one-year period.
Letters of intent must be submitted by March 27, 2020. The LOIs will be reviewed by members of the BDSRA board and invited scientific reviewers.
As always, the scientific merit of projects is paramount. We also greatly encourage projects that will pull together multiple funding sources, cross-lab collaborations, and projects that have promise of future NIH, DOD or other government, or industry funding.
More information on the LOI guidelines can be found on our website at www.bdsra.org/current-rfps.
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Living Rare, Living Stronger
Join BDSRA at the NORD Living Rare, Living Stronger Patient and Family Forum. This three day event will be taking place in Cleveland, Ohio May 14-16. You can learn more about the even below and at this link, https://rarediseases.org/living-rare-forum/.
"Living Rare, Living Stronger is an annual patient-focused conference held in a different location each year. Its agenda provides patients and families with practical tools for living their best lives with rare diseases and physicians and medical students with insights to take back to their practices and studies.
Four distinctive program tracks will present workshops geared towards:
- Newly diagnosed patients
- Long-term patients
- Caregivers
- Medical professionals and students
In addition to the sessions above, the Living Rare Forum will include a family welcome reception, a dedicated wellness room, children's programming, and an exhibit hall to add to the excitement of this unique event!
On Friday, May 15, in conjunction with the Forum, NORD will host its annual Rare Impact Awards, bringing attendees together to celebrate those making extraordinary contributions to the lives of people living with rare diseases. Join us at the Rock & Roll Hall of Fame for a night of celebration and recognition."
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This month we have new Facebook fundraisers organized by:
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.
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Your gift makes all the difference in the lives of families.
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