So, you have just signed up for our Fam Funds program; what happens now? Search your inbox for an email from Database Manager Noah Siedman, who gives helpful tips in this tutorial on what you’ll need to do next. Watch the full tutorial on our website: https://ow.ly/FxeG50Q8Qvy #MeetBattenFamilies #FamFunds #BattenAdvocatesForACure
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Ask-An-Expert webinars keep our Batten community informed about the latest in clinical trials, research, advocacy, and more. Your $5 donations help make these webinars possible. Thank you for giving to BDSRA and for helping families navigate their uncharted journey with Batten disease. Donate $5 today: https://lnkd.in/eb7y7bBW #5dollarfridays #fundraising #BattenDisease #BattenAdvocatesForACure #ClinicalTrials #Research #Advocacy #BDSRA #RareDisease
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Q&A: In this edition, BDSRA Database Manager Noah Siedman analyzes the sessions he attended at the Global Genes RARE Advocacy Summit, his message to the audience during the Rare Siblings panel, and his overall takeaways from the event and how they can help the Batten disease community: https://ow.ly/J06b50TCFQ1 #BattenAdvocatesForACure #WeekInRARE #RAREAdvocacySummit #battendisease #raredisease #panel #globalgenes
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Can’t stop, won’t stop sharing all the beautiful smiles from our Batten community. Happy Friday and World Smile Day! #BattenAdvocatesForACure #WorldSmileDay #battendisease #raredisease #smile
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SEPTEMBER NEWSLETTER: Get the latest news and important updates on BDSRA family grants, the memorial, the Global Genes RARE Advocacy Summit, and more! Read: https://ow.ly/f4K350TCz2U Sign up: https://ow.ly/L5kb50TCz2S #BattenAdvocatesForACure #newsletter #battendisease #raredisease
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We closed the 2024 Annual Family Conference in St. Louis with a Celebration of Life, honoring our Batten angels. 💜 Watch the full service on our YouTube channel: https://ow.ly/CtfP50TeI4r #BDSRAconference2024 #BattenAdvocatesForACure #BattenDisease #Bereavement #Memorial
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If you want the latest in Batten disease and BDSRA news, then sign up for our email list to receive our monthly newsletter, research updates, advocacy opportunities, and more! Sign up before Thursday to receive the September newsletter. Join our email list: https://ow.ly/mH1O50TxC2z #BattenAdvocatesForACure #newsletter #BDSRA #battendisease #raredisease
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IN CASE YOU MISSED IT: BDSRA Database Manager Noah Siedman attended the Global Genes RARE Advocacy Summit this week and served on the Rare Siblings panel on Friday. Noah will have a full report on what he learned from this event in our newsletter, The Illuminator, next week. Thank you Noah for representing the Batten community and BDSRA! Join our email list: https://ow.ly/ju3M50Txzfy Effie Parks #BattenAdvocatesForACure #WeekInRARE #RAREAdvocacySummit #battendisease #raredisease #panel #globalgenes
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Finding joy along the Batten journey can be difficult, but with $5, you have the power to help a Batten family smile. Our family parties help bring the Batten community together for stories, crafts, and laughs. That’s the power of FIVE. 🔗 https://ow.ly/HRXn50Tb4P9 #5dollarfridays #fundraising #BattenDisease #BattenAdvocatesForACure #raredisease
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Live from Kansas City, BDSRA Database Manager Noah Siedman has updates from the Global Genes RARE Advocacy Summit, where he joined the Rare Siblings panel earlier today. Stay tuned for a full report from Noah in next week’s newsletter! Join our email list: https://ow.ly/FXbt50Txva2 #BattenAdvocatesForACure #WeekInRARE #RAREAdvocacySummit #battendisease #raredisease #panel #globalgenes
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