Volunteer

Get Involved: Volunteer with the Foundation

The Foundation always welcomes new volunteers! If you’ve been affected by GBS, CIDP, or a variant, then you understand how important it is to have access to information and support. Our volunteers are key members of the Foundation team, and are invaluable in helping the Foundation support patients and their families. There are a variety of ways for you to get involved, and we are happy to work with you to find a role that best suits your interests.

Patient Support

With rare diseases, it’s easy to feel alone, but the Foundation is committed to building an inclusive community of patients, caregivers, family members, and medical professionals who are all united in support of our members. As many of you know from experience, having someone to talk to who understands what you are going through makes a world of difference. Our team of Liaisons–who are all either survivors/patients themselves or caregivers–volunteer to help in many ways, such as:

• Hospital awareness & hospital visits (when applicable) – Sharing educational collateral with local hospitals, rehabilitation and physical therapy clinics, is a great way to raise awareness in your local community. When applicable, visiting patients, in a hospital setting, who are coping with GBS, CIDP or a variant, can offer much needed support.
• Hosting local chapter meetings in person or virtual (when applicable) – Holding local chapter meetings for patients and caregivers is a great way to offer local support and further the Foundation mission of support and education.
• Providing peer-to-peer support through phone, email, or zoom – A friendly, knowledgeable voice and a quick chat can make all the difference in someone’s recovery.
• Submitting a patient or caregiver story – Our online story portal offers support and connection for both the reader and the storyteller. Simply sharing what you’ve been through, can give encouragement and relief to so many others.
• Editorial language translations – We will translate materials and presentations as we expand our global footprint. Are you fluent in other languages? Lending your translation skills will greatly support the worldwide goals of the Foundation.
• Topic and idea contributions to the newsletter – No better voice than that of the patient and caregivers themselves, when it comes to offering real-life experience and advice for coping with GBS, CIDP, or a variant. Do you like to write? We welcome editorial content from patients and care partners for our newsletters.

If you are interested in volunteering for patient support, please fill out the form below. While we appreciate all inquiries, please understand that we are limited in the number of volunteers we can accommodate.

Taking Volunteering to the Next Level

The Foundation volunteers are taking volunteering to a whole new level! Don’t miss a chance to tune into what our current volunteers do in the community.

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  First GBS|CIDP Bench in Italy
  We’re kicking off awareness month worldwide! Our volunteer from South Africa joined Nancy DiSalvo, her family, and the local city council to dedicate the FIRST-ever GBS CIDP park bench in Palermo, Italy.
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  Born to run: Brooklyn man diagnosed with rare disease is back doing what he loves
  In honor of GBS|CIDP Awareness Month, Michael Ring, GBS patient, shares his story with News12 The Bronx.
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  Community Finding Comfort with Rare Disorder
  Rick Forney, the Mid-Atlantic Regional Director for the Roanoke Chapter and GBS patient, hosted a chapter meeting during May Awareness Month, which brought together several patients and care partners. This support meeting was featured in the WFXR Fox news article called, “A community finding comfort living with a rare disorder.”
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  The Realities of Life with CIDP
  Crystal Sada, CIDP Patient, was featured on iHeart Radio, Untold Stories: Life with Myasthenia Gravis, The Realities of Life with CIDP and share how her life has been drastically impacted by this rare condition.
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  Making the Most of Now Podcast
  Clive Phillips, MMN Patient, created the Making the Most of Now Podcast to bring together the Multifocal Motor Neuropathy (MMN) community to discuss this rare neurological condition and related ones. He connects with medical experts, patients, and their supporters to inform and inspire our community.