Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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Live Cam Link: https://zurl.co/mn7D#LightthenightforALSP #NiagaraFalls #WhatawaytoendALSPAwarenessMonth
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Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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Celebrate your birthday with Sisters' Hope Foundation and create a Facebook Fundraiser! Contact us if you need assistance!#SpreadAwareness #Donate #HappyBirthday
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Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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Tag a caregiver who has made a difference! #Engage #SharetheLove
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Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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Join us in welcoming our new Marketing Manager, Jamie LaFleur! Jamie brings a creative flair with a medical background to the Sisters’ Hope Foundation team. Check out her latest original design for our upcoming move-a-thon - Sunshine & Sneakers. Don't you just love this bright, sunshiny design! We sure do! Register today to participate! https://zurl.co/VxAy #WelcomeJamie #Sunshine &Sneakers
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Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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Erin Sullivan, Executive Director, spoke with community Occupational Therapists today, educating them about ALSP. The presentation was so well received, she has already been invited back to speak with community Speech Therapists next month! Well done, Erin. Keep spreading the word!#ALSPAwareness #OT #Spreadtheword
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Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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Support Sisters' Hope Foundation and shop our Amazon Wishlist. We are gearing up for Volunteer Day and will be sending out our Doctor Tool Kit to numerous neurologists to spread the word of ALSP. https://zurl.co/eudj #VolunteerDay #AmazonWishlist #Support
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Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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Register today for Biomarkers 102, a follow up to Biomarkers 101. Dr. Fanny Mochel answers ALSP Community member's questions about biomarkers. https://zurl.co/eOmF #Biomarkers102 #Getyourquestionsanswered #Registertoday
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Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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#WordoftheWeek #Knowledgeispower #CSF1R #Mutation
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Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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Introducing The Blog, by Sisters' Hope Foundation. Each week, a new blog will be posted. During the month of June, we will run a series on safety in honor of National Safety Month. Check out blog post #1: Home Safety and Security. https://zurl.co/ULOe #NationalSafetyMonth #Blog1
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Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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Support Sisters' Hope Foundation and shop our Amazon Wishlist. We are gearing up for Volunteer Day and will be sending out our Doctor Tool Kit to numerous neurologists to spread the word of ALSP.https://zurl.co/eudj#VolunteerDay #AmazonWishlist #Support
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Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
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Groundbreaker. Leader. Advocate. Do you think of anyone in the rare disease community who embodies these qualities? Nominate them for the RARE Champions of Hope awards by Friday, June 7 at 12:00pm (noon) EST. https://zurl.co/hb2i
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