Conversations with Shirley Kessel

Today we’d like to introduce you to Shirley Kessel.

Hi Shirley, it’s an honor to have you on the platform. Thanks for taking the time to share your story with us – to start maybe you can share some of your backstories with our readers?
When my youngest daughter was 16 she was diagnosed with Migraine. During the visit with her new doctor, she has prescribed the same medication as I had received 25 years prior. Stunned, I asked the doctor why she was getting the same medications I had received when I was in my 20s. The doctor looked at me and said “well there’s nothing new for Migraine..” my daughter turned to me and exclaimed, “mom we have to do something about this why should I get the same medication you had? You’re so much older than I am!”

When we got home we looked for races online that were specific to Migraine and we only found one in the entire country. It was in San Francisco and we lived in Philadelphia. After much cajoling, I convinced the founder of Miles For Migraine to allow me to put a race on in Philadelphia. After several years of putting on the Philadelphia race as a volunteer people began asking me to take the race around the country. So I got a team together and off we went from two races until today when we have 24 races in the US.

It has not been easy, but it has been rewarding. I have chronic migraine and most days are a struggle for me. Most of the people I work with either have Migraine or have family members with Migraine. I have watched so many people lose their careers, drop out of school, lose marriages, and just struggle day to day.

Miles For Migraine has been a support system for so many people who struggle. Not only do we put on races to bring on more awareness about this disease and other headache disorders but we also have educational events, support groups, and social groups to create a community for people with this disabling disease.

We all face challenges, but looking back would you describe it as a relatively smooth road?
Not only hasn’t it been a smooth road but it’s amazing how many people discriminate against those with Migraine and other headache disorders. Most people think that a migraine is just a really bad headache but in reality, a headache is only one of the symptoms. There are so many others such as nausea, light and sound sensitivity, brain fog. Many people also have comorbidities such as anxiety and depression.

Migraine is an invisible disease and so many people are looked upon as fakers. Employers and family members don’t understand that while we look fine, there is a storm that is constantly brewing inside of our bodies. On the other hand, people who are in this community tell us that they feel validated and are happy to be part of a community where they feel understood and supported.

One of the other struggles we face is the lack of research that is done despite the disability that Migraine causes. For example, we only receive $25 million and research funding from NIH when in reality it should be 250 million based upon how many people are affected. So every year we hold an event with the alliance for headache disorders advocacy called Headache on the Hill where we talk to lawmakers about changing our demise.

Thanks – so what else should our readers know about your work and what you’re currently focused on?
I am the executive director of Miles For Migraine which is a nonprofit that raises money for headache fellowship programs. We have a lack of headache specialists in our country and the funding that we give to academic institutions helps to support their training programs. We hope that this will help to alleviate the shortage.

Our mission is to create a community for people living with migraine and other headache disorders. We do this by creating awareness through our walk /run and just relaxing events. We believe in supporting patients throughout the year so we also offer education, support groups, and social events for people to come together and be part of a community where they can feel supported and thrive.

I have had the opportunity to meet so many passionate people during my career. Working with world-renowned clinicians, and researchers have been rewarding for me to experience. Interacting with people who have a chronic daily headaches and many other symptoms is The most difficult part of my job. And even more difficult is talking with parents who have children who spend weeks in bed and drop out of school and their social lives.

On the other hand, I also know that these people I meet are so passionate about making better lives for people who must navigate pain and also stigma from the community. People living with headache diseases are some of the most creative people I have ever met and their ideas and enthusiasm bring light and joy to my work.

Any big plans?
I often tell people that I won’t retire until we find a cure for this disabling disease. My plans for the future are to fundraise as much money as our organization is able so that we can bring our programs to as many cities as possible.

There are so many people who live in remote areas of the country where no specialist for this disease exists. Furthermore, people of color are underdiagnosed and misdiagnosed, and as a community, our big plans are to change this.

Our plan is to bring more programming into the communities where these folks reside.

Contact Info:

• Website: https://www.milesformigraine.org/