I suffered from migraines in silence for so many years at home, at work, afraid I would mess up others’ schedules or lives, be discriminated against or even lose my job. I felt bad about disrupting their activities so I pushed through and put up with the stress. That is what you did in the 60’s, 70’s, 80’s and 90’s. I knew people had no idea what I was going through because it is an invisible disease. People always asked if I found a cure for my migraines and thought it was kind of like a headache and you go over it and then you are done! So I felt they did not want to hear that I still had migraines so I brushed it off when they asked me how I was doing and told me they hoped I get rid of them!
I am in a better place now. I feel more comfortable to speak out and I finally decided to become an advocate and help others in my situation.
When I decided to start the Miles for Migraine Virtual event in Vancouver, WA, I did not have a lot of participants to walk with but I had a lot of donors who knew me and knew vaguely that I have been fighting this disease for a long time (40 plus years) so they trusted me to chose the right association. To start such a project, you need to be motivated, patient, persistent and be perseverant. Reach out to lots of people; think of family members, college friends and peers, work colleagues, friends of friends who have migraine or who live with someone with migraine, doctors, your neurologist, pharmaceutical reps that your neurologist might know, people at your gym and various places in your community where you are known. Contact your local house representative and senators.
The first year I sent out 80 emails, the second year 100 emails and the third year 130 emails.
How do you find a location?
Look in your community to see if there is a trail or park. Walk there regularly to see what is going on. Check online to see what activities (sports, events…) they have and the dates. See if you can plan something without a permit around those dates. Usually if there are less than 20 persons you can get by without a permit (check online for the site requirements for specific events). Every park is different. I chose a community trail by a creek open to the public where you can bike, walk, run but it does not allow motorized vehicles. It has a very beautiful and peaceful scenery and most people make an outing of it for the day (this is key! It has to be attractive for family to come).
What were my expenses?
I spent roughly 100$ for enlarging, laminating posters plus 2 big signs at Office Max/Office Depot and bought a purple table cloth and balloons. I also bought water with snacks. Did not get a sponsor to pay for those, but that would be a good idea. I had a table. I usually use a neighbor’s white pop up tent, but this year he was using it, so I could not use it, but we had good weather so it was fine. I also got some magazines from US pain foundation about pain and migraine pain that a lot of people were interested in.
Did you get any help?
I organized everything myself with the help of my husband the day of and this year a rep from Amgen helped me set up.
Miles for Migraine provided the registration platform. They also created posters specific for my location that I had printed. Finally, they send me the shirts and medals for event participants.
Do not be afraid to share your personal story. When you send emails for your fundraiser tell people what a typical day is like for you.
Before the event send an email telling about what Miles for Migraine does and how funds are used. After a week, send your poster to be displayed at different places in the community (get help from your friends). The next week, send another email telling your personal story and add details about how your daily life is impacted by migraine and how advocacy can change things. Post on social media with the different hashtags. Every week send a different email to your donors covering a different aspect of life with migraine and always include the link to donate in every email.
Do not forget at the end, after the race is done, to send a thank you note to all your donors telling them how their funds will be used. Important! People want to know where their money is going!
Then, last email, send pictures of your race so the long distance donors know it really happened!!
Hope this helps everyone,
Francine Martinie Chough