Hi Patrick,
A massive WELL DONE to Trish and Katie on racing so much money in the Bath Half Marathon.
Co-incidentally, my husband also called Patrick, once ran in the Bath Marathon when we lived in Uley, Glos for 21+ years.
My family are committed fundraisers for the ARF with my daughter Chloe having been fundraising for the ARF in a number of different ways. I have written a few fundraising stories for the 2 amyloidosis newsletters over the years. Chloe has an ongoing fundraiser called Bespoke Poems in aid of amyloidosis. She has a Facebook page with that title. This summer she is walking part of the Jurassic Coast here in Dorset in aid of the ARF. Last year she had an amyloidosis poem she wrote a long time ago made into a rap recoded for her by a voice artist friend. It has been used at fundraising events several times. It expressed what my diagnosis of amyloidosis felt like for our family. She added a slide show featuring NAC Staff and patients. My family and Miriam our amazing NAC Forum Moderator are also featured. Chloe made the rap into a YouTube video once again to fundraise for the ARF.
In my family we always say that fundraising for the ARF has a two pronged important benefit by raising much needed funds for the ARF and simultaneously promoting amyloidosis awareness thereby promoting earlier diagnose of this cruel disease.
Here is a link to Chloe’s amyloidosis rap. Please do listen and watch.
https://m.youtube.com/watch?feature=youtu.be&v=h2bw5L2UzO8Please could I draw your attention to my post asking for volunteers for a survey for Hereditary ATTR amyloidosis pations in the General discussions thread?
I hope you might be willing if you meet the criteria to take part?
Interestingly Clare Williams the Market Researcher also lives in Uley, Glos where we lived for over 2 decades. Small world!
If so a huge thank-you. Only 1 volunteer so far. 4 are needed.
Here’s hoping!