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List of resources – Just wanted to share a list of helpful organizations
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8 Replies
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https://als-ny.org/navigating-als/patient-grant-program/
https://everylifefoundation.org/financial-support/ (list of grantors)
https://lesturnerals.org/support-services/grant-programs-equipment-loans/
https://www.needymeds.org/copay_diseases.taf?_function=summary&disease_id=151&disease_eng=Amyotrophic%20Lateral%20Sclerosis%20%28ALS%29&dx=18&drp=als (list of assistance programs)
https://www.youralsguide.com/resource-list.html (list of assistance programs)
https://www.healthwellfoundation.org/fund/amyotrophic-lateral-sclerosis/ (Medical expenses)
https://www.welcomefunds.com/financial-assistance-lou-gehrig-disease.html (convert life insurance to health fund….need life insurance of $100K or higher)
https://rarediseases.org/patient-assistance-programs/financial-assistance/ (list of grant resources)
https://www.racingforals.com/patient-assistant-van-fund (transportation grants)
https://www.alsfindingacure.org/author/phama/ (list of assistance programs)
https://chivecharities.org/ Chive Charities is a 501(c)3 organization dedicated to supporting underserved veterans, military families, first responders, and rare medical diagnosees with life-changing grants.
https://littlezebrafund.org/mission genetic testing
https://everylifefoundation.org/rare-scholarship/ (education grants)
https://www.alsinwonderland.com/ (Arkansas resources)
https://www.thesusiefoundation.org/programs (medical expenses, transportation, home adaptiations)
christopherreeve.org
Priority Impact Quality of Life Grants - Get Support
Priority Impact Quality of Life Grants
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Looking back on my 18 months since I was diagnosed with ALS one word or service that has provided me with assistance other other than my ALS association is team Gleason and organization out of New Orleans who has provided me with several attachments for my power wheelchair and shower chair specially built for me. They paid 100% of the cost approximately $20,000.
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Coming from NOLA, I was a huge Steve Gleason fan!! I was heartbroken when I heard he had ALS. However, as with any situation, Steve has taken a challenging situation and made a difference for his team — us, the ALS community! Thank you for sharing. I have heard so many amazing things about this organization. NO WHITE FLAGS!
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I should include
everythingals.org
Every week has presentation of some experts and innovative trials
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Thank you Roman!! What do you think of the presentations?
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Hi Amanda
In everythingals I have found guests who gave as vía zoom an excellent presentations showing us advances and results of some clinical trials and als topics, such us:
Phase 2 of PARADIGMA (prime C), Radcliff, stem cells, digital biomakers. Nurown, Healey program, and more. When there are no guest we chat and share experiences. The facilitators have a lot of compassion, as you and Dagmar have with us. I am new in this als community but I feel I have been here since my diagnosis.
Thanks for your great support
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Roman, thank you!
And I agree, the EverythingALS group is very helpful with their relevant seminars and video library. I happen to be in their voice study as well.
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