Author Topic: London to Paris June 2017  (Read 3641 times)

Linsey

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  • Posts: 2
  • Reason for joining: AL amyloidosis patient
  • Diagnosed: October 2014
London to Paris June 2017
« on: May 02, 2017, 08:22:41 pm »
Me and my husband are cycling on our Tandem from
London to Paris 4th to 7th June this year to raise funds and awareness for the Amyloidosis Research Fund.

I was diagnosed with AL Amyloidosis in November 2014 after having a stroke due to arythmias caused by the amyloid in my heart. At the time I was in a bad way and in stage 3 heart failure. Thanks to the treatment I received at the NAC my light chains reduced quickly with the chemotherapy and over the past 2 years my health has been getting better and better. I was fairly fit before I got ill and was determined that this disease would not get the better of me. Although I cannot run any more and struggled with prolonged exercise due to tiredness my husband Darren and I decided we would and could do something to help me get a bit of fitness back.

My husband Darren is a strong and keen cyclist so we decided that if we got a tandem we could still exercise together (he wouldn't and couldn't leave me behind)! Starting slowly we realised that we could do this and set ourselves a goal. London to Paris! And an objective - raise awareness of Amyloidosis and try and raise funds for the Amyloidosis Research Fund.

Training is going well and even though I am on the Pronto trial which sets me back for a couple of days each month we are on track for the big ride next month! 4 days in the saddle!

I want to show that Amyloidosis is not the end, it's just a different path than expected and it cannot dictate my life.

Please support us on our ride next month. all donations through just giving go direct to the Amyloidosis Research Fund and will benefit all of us and hopefully they will one day find a cure!!

Visit just giving.com and search Linsey and Darren Frostick and give what you can.

Thank you 😊

Linsey & Darren

Linsey

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  • Posts: 2
  • Reason for joining: AL amyloidosis patient
  • Diagnosed: October 2014
Re: London to Paris June 2017
« Reply #1 on: June 18, 2017, 11:24:10 am »
We did it, London to Paris in 4 days by tandem!! It was very hard and definitely a challenge with 30 mph head wind for 100 miles on day 2 and lots of hard hills! Thanks to support from friends, family and fellow patients & family at the NAC we raised £630 towards the Amyloidosis Research Fund.

georgeturner

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  • Posts: 126
  • Reason for joining: Patient Familial ATTR amyloidosis
  • Diagnosed: 13 May 2014
Re: London to Paris June 2017
« Reply #2 on: June 19, 2017, 01:59:46 pm »
Well done Linsey and Darren. I hope you enjoyed the ride. What a great effort to raise funds for the ARF. I'm sure it will help the NAC and hope it will lead to new treatments for Amyloidosis. I'm sure our fellow patients will appreciate what you've done.
Meanwhile I hope the Pronto Trial continues to produce good results for you and everyone on the trial. Hopefully it makes onto the market.
Thank you and good health to you both.
Slainte Mhath,
George

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: London to Paris June 2017
« Reply #3 on: June 21, 2017, 04:36:15 pm »
Excellent news Linsey and Darren. A remarkable tandem ride by you both.  :) :)

A a former cyclist myself and a member of a family of very keen cyclists, I understand the amount of preparation and training necessary to cycle from London to Paris. I used to ride tandem with my Dad  while growing up and enjoyed it immenseley. A 30mph head wind for 100 miles was certainly a very tough challenge, not to mention some long steep hills. In addition to raising much needed funds for the ARF, you will have spread plenty of amyloidosis awareness, en route. A two pronged benefit of any fundraising event for amyloidosis.

Congratulations on achieving your goal and a big thank-you from a very long term NAC patient who along will all NAC patients benefirs in many ways from all funds raised in aid of amyloidosis research at the NAC.  :)

I echo George's words....I too hope things are going well for you Linsey in the PROTO clinical study.
Pat