awareness month

May is GBS|CIDP Awareness Month

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May is GBS CIDP Awareness Month

Share the Aware #GBSCIDPsharetheAWARE

Although 2020 brought unprecedented challenges and changes, the world over, 2021 has provided an opportunity to refresh, reset and renew.  We enter this year with new and innovative ways of connecting, an expansion of Foundation programs, and a newly inspired sense of hope for the year ahead. We hope you have found comfort in knowing that the GBS|CIDP Foundation International has continued to Support, Educate, fund Research, and Advocate for our patients, as well as creating new and valuable resources along the way!  

Are you AWARE of what’s new and exciting for our members in 2021?  Check out our 2021 programs & resources below, then Share the Aware, for the GBS|CIDP and variant community!

Support Awareness

  • May 11-19: Barry Shore says Slay Stress, Be Happy, and Support the GBS Foundation International…here’s how! – From May 11 – 18, $1 dollar is donated to GBS|CIDP Foundation International with every purchase of The Joy of Living: How to Slay Stress and Be Happy, by GBS survivor and motivational speaker, Barry Shore! Find out more: www.barryshore.com/gbs/
  • Register for May 15 VIRTUAL Regional Conference– Join us for our first VIRTUAL Regional Conference, hosted by GBS|CIDP medical experts from our Global Medical Advisory Board(remove comma) and medical professionals from our Dallas and Seattle Centers of Excellence. All are welcome to join, no matter where you reside! Learn more about your condition, available treatments, life after diagnosis, practical daily advice relating to emotional health, and more. Find out more and register today.
  • Discover Youth, Teens & Young Adults (YTA)Program –  In 2021, we launched a new program, Youth, Teen & Young Adults (YTA), specifically designed to support and connect our young members with resources that address their unique needs and requirements. If you are a YTA, or the parent or caregiver of a YTA, find out more about our program resources, as well as ways to meet others and get involved.
  • JOIN Monthly ZOOM COFFEE CHATS – We continue to hold our monthly ZOOM coffee chats for members to connect, share stories, find support in a network of patients, caregivers, and foundation staff… and have some fun too. Check out our May coffee chat schedule, and register to participate!

Education Awareness

  • Watch (and share!) the ASK THE EXPERTS VIDEOCAST!  Our new virtual “Ask the Expert” episodes featuring medical, legislative, and wellness experts in the field of GBS|CIDP. Newly released topics include: COVID-19 Vaccines Explained, Movement is Medicine and Best Practices for Estate Planning. Discover these and more! 
  • Stay updated on COVID-19 and the GBS|CIDP Community – We will continue to provide up-to-date news and information on our COVID-19 educational portal, featuring our Global Medical Advisors, Researchers, and Industry Leaders specializing in treatments and cures for our rare neurologic conditions.
  • ·Discover Multi-Lingual Overview Pamphlets – This year, we have released our GBS|CIDP overview pamphlets in over 17 different languages, and growing. 
  • Share our NEW EU Website – On Rare Disease Day2021, we launched a new EU website specifically designed for our members in the European Region, featuring local news, events, volunteers, and support.

Research Awareness

  • Learn more about the DISCOVERY AWARD – For the very first time in 2021, we will be granting a “Discovery Award” for research. This type of grant awards up to $100,000 per year for a period of two years to intermediate/experienced researchers seeking to answer complex research questions about GBS, CIDP, or variants. Find out more about our research grant program.
  • Stay updated on current Clinical Trials – Clinical trials involve a strong collaboration between researchers, drug-makers/pharmaceutical companies, hospitals, patients, and doctors. Patient support organizations/foundations can help patients share their experiences with researchers, highlighting what being afflicted by a certain disease has meant to them and sparking innovative ideas in researchers. There are several new clinical trials in process right now that support research for GBS, CIDP, and variants. Find out more about the clinical trial process, current opportunities and how to get involved.
  • Walk and Roll for Research – Find out how to get involved in our National Walk & Roll Fundraising program,  and see 2021 Virtual Walk Calendar! Walk & Roll is a great way to raise awareness, show your support, make friends and build a local network. And every dollar raised by you, to go directly to RESEARCH. 
  • Join the GBS|CIDP Patient Registry, share your experience, and play a critical role in a better tomorrow for patients everywhere. The GBS|CIDP Foundation invites you to join the online Patient Registry for patients with GBS|CIDP or variants of the condition.

Advocacy Awareness

  • Be a Plasma Hero on MAY 3, and Beyond – Plasma can be used to create life-saving therapies. The global demand for plasma has been steadily increasing over the years, but as of recently, it’s hit a critical mass. Now, more than ever, we need heroes to step up and donate plasma if we want to continue to treat those who rely on it, like patients with CIDP and variants. But we need your help. We need heroes to step up, donate plasma, and save lives. On May 3, 2021, the Plasma Hero campaign will be in full swing on all social channels for the Foundation as well as those social channels of our APLUS partners. Please Share the Plasma Hero Aware! You can expect a full day of sharing patient stories and highlighting the many ways plasma donors are heroes.  Find out more about becoming a Plasma Hero today!
  • Learn more about our work with the FDA – After holding a GBS Patient Listening session with the FDA in the Summer of 2020, the Foundation has continued to work with key leadership at the FDA to continue bringing the patient voice to their current work. Find out more about this unique and valuable partnership.
  • Join the 50 to FORWARD campaign!  Looking for an advocate in all 50 states!  Take action now, whether you are a patient, caregiver, friend, or family member, we encourage you to Use Your Voice and help us tell Senators and Congresspersons about what is important to the GBS, CIDP and variants community.  This May we are actively seeking advocacy leaders from every state to help us reach every member of Congress this year and hold a record number of meetings during our upcoming Month of Action. Visit the Foundation Advocacy Action Center and join our 50 to Forward campaign!

Get Involved:

May is GBS|CIDP Awareness Month, please share the Aware, #GBSCIDPsharetheAWARE, all month long!

Raise Awareness by adding a little #sharetheaware flare to your facebook profile picture.

Go to your facebook page and click on the camera icon on your profile picture. Click add frame. Search for a frame by entering Share the Aware 2021 or GBS|CIDP Foundation International. Click on the frame and save.

May is GBS|CIDP Awareness Month

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Today. Tomorrow. Always. #GBSCIDPAwareness

May of 2020 has brought unprecedented challenges and changes, the world over. We hope you find comfort in knowing that the GBS|CIDP Foundation International has made every effort to continue to Support, Educate, fund Research and Advocate for our patients in new and innovative ways. We are here for you today, tomorrow and always.

This May, GBS|CIDP Awareness Month, we encourage you to watch our new virtual “Ask the Expert” series featuring medical and legislative experts in the field of GBS|CIDP.  Additionally, we have provided up-to-date news and information on our COVID-19 educational portal, featuring our Global Medical Advisors, Researchers and Industry Leaders specializing in treatments and cures for our rare neurologic conditions, and new and innovative opportunities to join our advocacy efforts for legislation that directly affects our patient community.

This May, please join us in raising awareness of all patients struggling with GBS|CIDP, and the many efforts being made to support our community in these times of uncertainty, and in their time of need. #GBSCIDPawareness

May is GBS|CIDP Awareness Month

Congress Recognizes the month of May as GBS|CIDP Awareness Month

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Congressional Record

On May 22, Congressman Blumenauer, of Oregon, recognized the Month of May as GBS|CIDP AWARENESS Month and introduced the Medicare IVIG Access Enhancement Act to the House of Representatives. Read full script here

Additionally, Congressman Holding of North Carolina also introduced the Medicare IVIG Access Enhancement Act on May 23rd. Read full script here.

Download (PDF)

 

 

May is GBS|CIDP Awareness Month

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Be your own best advocate.

Did you know that Medicare part B can restrict your location of care for your IVig treatments? Or that each year, your voice can influence Congress on important issues such as funding the National Institutes of Health’s research into GBS and CIDP?

Whether you are a patient, caregiver, friend, or family member, this May, GBS|CIDP Awareness Month, we are encouraging you to learn more about the Foundation’s legislative initiatives – which include a bill to create a Medicare Part B Home Infusion Demonstration Project, an ask for GBS to be included on the Department of Defense PRMRP list, and increased funding for NIH and CDC – use your voice, and be your own best advocate!

AWARENESS GOAL = REACH MEMBERS OF CONGRESS IN EVERY STATE!

How do I get involved?

On May 1, 2019, day one of GBS|CIDP Awareness Month, we will be launching our “Advocacy Resource and Toolkit” including:

Advocacy Manager Chelsey Fix with Advocate on Capitol Hill
Advocacy Manager Chelsey Fix with Advocate on Capitol Hill

  • Educational Resources, to keep you informed and “in the know”, including answers to questions like: What is advocacy? How does a bill become a law? What is the difference between State and Federal advocacy? As well as, an outline of current legislative issues that may have a significant impact on your treatment and care.
  • Advocacy Toolkit, for connecting with state and local representatives, including downloadable handouts with “Facts & Stats” about the GBS|CIDP and variant population in your state, a “letter” template to send to local representatives, designed to inform them of the issues & let them know that you are a rare disease patient or caregiver in their region! Remember they represent you!
  • Social Media – Social media is one of the most effective ways to raise awareness! Join us on social media all month long as we will provide updates to our number of “advocate volunteers” as well as the states they represent! Share, comment and join the conversation! #gbscidpADVOCATE

  • Updates from the Hill – Staff and volunteers from the GBS|CIDP Foundation International will be fighting the good fight and bringing GBS|CIDP awareness to Capitol Hill on May 23 – Stay tuned for live updates!

Are you ready to take action and raise awareness for your rare condition?  Be Bold. Be Unstoppable. Be the Change. Learn how to be your own best advocate.

For questions contact Advocacy Manager Chelsey Fix, Chelsey.fix@gbs-cidp.org.

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