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Plan now to participate in the IWMF’s Walk for Waldenstrom’s in September 2023!
There are two purposes for this walk. One is to raise awareness of our very rare form of lymphoma, Waldenstrom’s Macroglobulinemia, and the second is to raise funds to allow the IWMF to continue funding leading edge research, and to provide education and support to patients and caregivers around the world.
Paul Kitchen, IWMF Board Member, has some tips and suggestions based on his past and current efforts in the Walk for WM:
"I am volunteering to walk as far as I can each day for 30 days of September. I am hoping to average between 5 and 6 miles a day walking a distance that would be equivalent to travelling from my home in Rothesay, New Brunswick, Canada to Calais, Maine in the USA. This journey will be about 150 - 160 miles. Each day there will be an update of my progress posted on the IWMF website. There will also be a blog informing you how the walk went that day.
In 2021 I undertook a similar walk and had a number of WMers join me. If we could have a few other WMers try to walk, cycle, swim, use an elliptical or treadmill in September, they might well get support from their contacts for their “walk.” We understand that many WMers are in different stages of their disease journey and may not be able to take on a physical activity for the walk. Even so, you can still participate by doing something that you enjoy and taking it on as a challenge of sorts – baking cookies, reading books, lawn bowling, or whatever suits your fancy and can engage your family, friends, and local community members to pledge to donate on your behalf!
For an example of the publicity I received in local media outlets about my walk, see: https://globalnews.ca/news/7672453/rothesay-nb-man-300-km-walk-rare-cancer-awareness/.
And for an example of the blog I used to chronicle my daily activities see: https://www.wmfc.ca/make-a-donation/may-is-research-month/
Even if someone supports you for ten cents a mile (or ten cents a cookie) it all adds up. Every dollar helps. All contributions will receive a receipt for income tax purposes. To set up a fundraising activity and have folks donate on your behalf, you can use the MightyCause app available on the IWMF website at: https://www.mightycause.com/event/Iwmf2023 (if you need help with this, please contact the IWMF Office at [email protected] and a staff member will be in touch to assist you).
There are many charity walks, but they often take place in big groups for one day. For the IWMF Walk for Waldenstrom’s, we are trying to have individual or smaller group walks that take place in one or more days. Doing an activity over 30 days in September is also an option and is different enough that it might well catch the attention of a media news outlet. I was recently contacted by our local newspaper which is planning to do an article about my walk. If you are a volunteer who is going to try and walk a few miles each day, call your local newspaper or radio station and see if they will do a quick interview. You will be surprised how the publicity will change the amount of money you can raise.
My journey with WM began in 1970’s when my mother was diagnosed. At that time there were no treatments other than blood transfusions. She lived for approximately five years after her diagnosis.
In 2011 I was diagnosed and treated for low IgG. Despite my history I was assured I did not have WM. In 2014 when my haemoglobin dropped significantly, I was finally diagnosed at Dana Farber. My first treatment was Rituximab, Velcade and Dexamethasone. I then did two years of maintenance from 2015-2017. But in the summer 2020, my haemoglobin again dropped, and I started on Ibrutinib in October of 2020. Unfortunately, my atrial fibrillation returned and in April of 2021 I commenced Brukinsa which I have done very well on except when I was affected by COVID. I feel so blessed to live in an era where the IWMF has been able to sponsor so much ground-breaking research and made so many improvements to the life expectancy and quality of life for WMers.
All the support we can give the IWMF will allow for investment in new research that will help find even more treatments for WM and help our rare disease eventually be eradicated. Our support will also help the IWMF provide education and support to everyone around the world affected by the disease.
Please feel free to contact me at [email protected] if you need any advice or encouragement or if you have any questions.
Let’s all see what we can do to help the IWMF funded research conquer Waldenstrom’s Macroglobulinemia.
Thank you and good luck to any and all volunteers."
Paul Kitchen
IWMF Board Member
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