Write to your MP
Does your MP know about GBS and CIDP? Well we think they should.
Back in July, we had a general election in the UK. It seems like a long time ago now doesn’t it!
Well, following the summer recess, MPs have returned to parliament, and we thought that this would be a great time to let them all now about Guillain-Barré Syndrome, CIDP, MMN, and other related conditions, as well as the issues associated with the conditions, and the work of GAIN.
It would be great if as many as people wrote to their MP (whether they are newly elected or have been your MP for a while) and raised awareness of our community and the issues that it faces.
To find details about your MP’s address or email address go to Find your MP – MPs and Lords – UK Parliament. Just enter your postcode and you can get their address or email address which you can use to send your letter.
To make it as easy as possible, we have put together a draft letter that you can use. Feel free to use it as it is (just add your details and theirs), personalise it and shatre your own experiences, or write a letter of your own. If you want to use our letter, just cut and paste it from here.
RE: Support for GAIN (Guillain-Barré Syndrome and Associated Inflammatory Neuropathies)
Dear [MP’s Name],
I am writing to you as one of your constituents to raise awareness about Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and other related inflammatory neuropathies, as well as to seek your support for GAIN (Guillain-Barré and Associated Inflammatory Neuropathies), the only UK charity dedicated to supporting people impacted by these life-changing conditions.
GBS and CIDP are rare but serious conditions that impact the peripheral nervous system, which can lead to severe and long-lasting disability. They affect around 1,500 people in the UK each year. These conditions can develop suddenly and without warning, leaving individuals and their families facing profound physical, emotional, and financial challenges. While some people recover fully, others live with long-term effects that can severely impact their quality of life.
GAIN plays a critical role in supporting people impacted by these conditions by providing essential information, advice, and emotional support. The charity also funds and conducts research to improve the understanding and treatment of GBS, CIDP, and related neuropathies. Moreover, GAIN works tirelessly to raise public awareness about these conditions to ensure that more people can receive timely diagnoses and appropriate care.
As a Member of Parliament, I urge you to champion the cause of those impacted by GBS, CIDP, and similar conditions by:
- Raising Awareness: Please consider using your platform to highlight the challenges faced by those living with these rare conditions and to promote the work of GAIN
- Supporting Funding and Research Initiatives: Advocate for increased government and NHS support for research and treatment related to GBS and CIDP
- Championing Patient Access: Help ensure that people impacted by these conditions have timely access to the best possible diagnosis, treatments, support services, and rehabilitation, which can significantly impact their recovery and quality of life
- Meeting with GAIN: I encourage you to meet with representatives from GAIN to learn more about their work and the challenges they face in supporting people impacted by these conditions. You can find out more about GAIN at www.gaincharity.org.uk
Your support could make a tremendous difference in the lives of individuals and families across the UK who are affected by these devastating conditions. Thank you for considering this request, and I look forward to hearing from you about how you can help raise awareness and support for this important cause.
Yours sincerely,
[Your Name]
[Your Signature if sending a hard copy]
If you’d like any help then get in touch with the office at office@gaincharity.org.uk or call 01529 469910.
Let us know that you have written to your MP, and let’s see how many MPs we can reach.