Author Topic: Raising Funds for Amyloidosis Research  (Read 3916 times)

Pat

  • *
  • Posts: 7
  • Reason for joining: Hereditary ATTR H90D Diagnosis
  • Diagnosed: May 2017
Raising Funds for Amyloidosis Research
« on: February 04, 2018, 03:20:46 pm »
Dear all,

I was diagnosed with TTR Amyloidosis in May last year and like many of you had never heard of it before.
My wife Trish has been an amazing support during the last 9months.   On Sunday 4th March, Trish and her friend Katie are taking part in the Bath Half Marathon to raise awareness of Amyloidosis and to raise much needed funds for research.
So far the response has been staggering and they have raised just under £2,200 with 4 weeks to go.
If any of you would like to sponsor them, the link to their just giving page is:
www.justgiving.com/fundraising/Trish-Morse1
Equally, if you live near to Bath and want to pop down, it’s an amazing event and if you see them give them some encouragement as they pass by.  They are getting T-shirts made up with the Amyloidosis Fund logo, so should be easy to spot amongst the 15,000 other runners!!
Kindest regards to you all, Patrick.

patpinchin

  • *****
  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Raising Funds for Amyloidosis Research
« Reply #1 on: April 12, 2018, 02:07:30 pm »
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=h2bw5L2UzO8

Please 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!  :)
« Last Edit: April 12, 2018, 02:30:40 pm by patpinchin »
Pat

Pat

  • *
  • Posts: 7
  • Reason for joining: Hereditary ATTR H90D Diagnosis
  • Diagnosed: May 2017
Re: Raising Funds for Amyloidosis Research
« Reply #2 on: April 20, 2018, 02:51:27 pm »
Unfortunately Bath Half was cancelled due to snow, however Trish and Katie still managed to raised over £4,100 (including gift aid) for Amyloid Research.   

Miriam Vered

  • Administrator
  • *****
  • Posts: 560
Re: Raising Funds for Amyloidosis Research
« Reply #3 on: April 20, 2018, 02:55:13 pm »
Hi Pat,


That's fantastic! Many thanks to you, Trish and Katie on behalf of the National Amyloidosis Centre.

patpinchin

  • *****
  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Raising Funds for Amyloidosis Research
« Reply #4 on: April 20, 2018, 05:44:06 pm »
WOW! Such great news.  :) :)

Thank you so much Trish and Katie.  :) :)
You must be two very fit ladies with lots of supporters.
As well as raising so much money, what a lot of amyloidosis awareness your efforts will have raised amongst family and friends near and far. Fundraising for a rare disease is definitely not easy.

Every NAC patient benefits hugely from The Amyloidosis Research Fund.  :) :)

Am sure as eggs many others will feel the same as I do.  :) :)

« Last Edit: April 20, 2018, 06:49:08 pm by patpinchin »
Pat

patpinchin

  • *****
  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Raising Funds for Amyloidosis Research...update
« Reply #5 on: July 20, 2018, 03:16:38 pm »

Chloe’s fundraising walk in aid of the Amyloidosis Research Fund at the NAC along 44kms of the Jurassic Coast takes place this coming Sunday,
July 2st.

See attached photo below. Chloe printed the image off onto a transfer then ironed it on - very easy for other Amyloidosis Research Fundraisers.

Donations gratefully received at link below.
Every penny will be very well spent and hugely  appreciated.

 “Every gift of any size will make a real difference.”

https://www.justgiving.com/Chloe-Bullock1

Pat

patpinchin

  • *****
  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Raising Funds for Amyloidosis Research
« Reply #6 on: July 22, 2018, 07:33:44 pm »

Jurassic Coastal walk from Bridport to .weymouth completed in 9h23m yesterday

Chloe has raised £782+ so far for The UCL Amyloidosis Research Fund with more donations promised.

So very proud of our daughter.  :) :) :)
Pat