Ask me what is Amyloidosis ?

$3,265 of $5,000 goal

Raised by 38 people in 28 months

My sister Shari and I just lost our father to a really rare disease most people haven't heard about. It's called amyloidosis, it causes  abnormal protein called amyloid to build up in your tissues and organs. It has no cure. This is a disease some people working in the medical field don't even know about. If our dad could have received an earlier diagnosis he might still be with us. Our dad was only 62 when he died. Up until he got his diagnosis he was a healthy person who was living a happy life. He did everything right and was the epitome of kindness. It was life changing for our family to understand why this happened to him. It took months of seeing several different doctors to even put together a treatment plan. The hope was that the treatment would give him more time as we knew there was no cure. He had primary AL amyloidosis and it was affecting mainly his heart. He was doing chemotherapy and his numbers of abnormal protein were going down quickly. It was working! But his heart function was getting worse. It was a constant battle of trying to find the right balance. It was trial and error and learning curves. Doctors wanted to study him, they wanted to learn. It was a scary thing having people not knowing what to do. Unfortunately even though his numbers were almost at 0  and he was reaching the possibility of a stem cell transplant, he died suddenly before he got the chance. We want to help raise money and donate it to causes that will spread awareness and help with the research needed to know more about it. These donations will also help to educate medical personnel about this devastating disease. We have set a goal this summer to run three Spartan obstacle races earning a trifecta medal for completing three in one season.  This adds up to approximately 35-40 kilometres of running and 75+ physically demanding obstacles. At these races we plan to wear t shirts and start informing others of this disease. In the future we hope to host our own 5k walk/run dedicated to our dad where we can raise money that way too. The money that is donated will be going to The Canadian Amyloidosis Support Network. Any contributions would be greatly appreciated.  Our dad fought this disease for nearly a year and was so positive throughout.  He wasn't angry because he saw young children getting chemo and he said he couldn't be mad when he saw that. We want his bravery and courage to mean something. We want other people to have the chance to fight this. Early detection is so important! Thanks so much in advance. Please follow us on our journey at:

https://www.facebook.com/runningforamyloidosis/?ref=page_internal

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I just wanted to post an update as we are over half our goal! Thanks so much to everyone who has taken the time to read our story and donate. The donations we have received will be given to The Canadian Amyloidosis Support Network. This organization aims to provide education about the disease, support families, awareness campaigns, fundraise and support high value research projects. We hope by raising awareness more people will come to learn about this disease.
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Ask me what is Amyloidosis ? has reached 50% of its goal. Thanks to everyone who has supported us this far!
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A few more photos of dad :)
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$3,265 of $5,000 goal

Raised by 38 people in 28 months
Created March 19, 2017
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RB
$120
Ryan, Shari, Carly Barker
19 months ago (Offline Donation)
MD
$30
Maggie Doherty
21 months ago
AM
$50
Andy and Sheila McKerroll
21 months ago
AK
$100
Alex Klym
22 months ago
GC
$50
Glenn Catto
22 months ago (Offline Donation)
CH
$100
Chad Heathers
22 months ago (Offline Donation)
KC
$50
Kristen Carr
23 months ago

Your efforts are amazing. Keep it up! :)

KD
$25
Katie Davenport
25 months ago
1
1

What a great tribute to your father and educating people along the way! Wishing you two all the best and a wonderful adventure to what will be an amazing accomplishment.

KR
$50
Ken & Marion Rourke
25 months ago (Offline Donation)
1
1
TJ
$50
The Johnstones
25 months ago
1
1

You two are an inspiration, much love xo

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