December 2020 Volume 31, Issue 12
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BDSRA Annual Fund
You folks are crushing it! So far, you have raised more than $94,000 for the annual fund campaign. At the beginning of the campaign, we set a goal of $175,000 thinking it may be a little ambitious, but every step of the way you have surprised and humbled us with your generosity and love for the Batten community.
The last days of December see more donations than any other time of year, and our goal is well within reach. With your help, we can make sure Batten families can get the support they need!
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Research Updates
From Polaryx: A Safety, Tolerability, and Efficacy Study of PLX-200 in Participants With Mild-to-Moderate Juvenile Neuronal Ceroid Lipofuscinosis (CLN3) Disease. Find more information here.
Parents and Caregivers join BDSRA and Dr. Dave Pearce on the caregiver Facebook page for a quarterly research update on January 7th at 6pm EST. More details to come!
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Sibling Spotlight
This month we'd like to put a Spotlight on Batten sibling Coreena A! Coreena started a blog, Stronger than Batten, about Batten disease and the experience of Batten families. It started out as a school project but she's kept it going, check it out here!
Batten siblings are an incredible group BDSRA is continually amazed by the great things they do for their families and communities. DO you know a sib you should be in the spotlight? Let us know!
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AmazonSmile
Do you shop on Amazon? Did you know that you can designate a charity to receive 0.5% of your eligible purchases? Every little bit counts! So far BDSRA has received $6,104.56.
Its now even easier than before! AmazonSmile is now in the Amazon Shopping app. You can now support your favorite charity on iPhone & Android phones. You can find details on how to add a charity to your app here.
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2021 BDSRA Annual Family Conference Update
Planning for the 2021 BDSRA Family Conference is underway! The conference will be July 23-25 in Denton, TX at the Embassy Suites by Hilton Denton Convention Center. You can learn more here!
We would love to connect with Texas families to help with our conference planning. If you're interested in being a part of our planning committee please email Morgan at mdeboth@bdsra.org.
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This month we have new Facebook fundraisers organized by:
- Amanda Benson
- Dixie Bergeron
- Jen Carlson Einstein
- Peg Ference
- Krista Fisher
- Donna Fogle
- Chelsi Fread
- Nancy Hynie
- Trent Lewis
- Calvin Lime
- Barbara Bouk McDonough
- Jess Peace
- Rise Up For Grant Big Bass Tournament
- Rinaldo Sarazen
- Ramee Sharpe
- Hugh Smith
- Tracy VanHoutan
- Tammy Vaughn
- Mary Stahl Wendel
- Sarah Concidine Whitehead
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.
Olivia Grace Lewis
June 9, 2006 ~ December 15, 2020
Shakshi Rajpoot
December 5, 2020
Poyraz Kosker
December 4, 2020
Noah Johnson
November 22, 2000- August 4, 2020
To have your loved one's name placed in the Illuminator please reach out to Morgan at mdeboth@bdsra.org.
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Your gift makes all the difference in the lives of families.
You can view recent donations to BDSRA here.
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Batten Disease Support and Research Association
(614) 973-6013 | info@bdsra.org | www.bdsra.org
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