My Journey with Patient Advocacy

I have been a patient advocate for as long as I have been a nurse, which is a LONG time!  In fact, throughout my careers as nurse, teacher, and health educator, my overarching goals have been to advocate for and empower people to take charge of their health. This was crucial when I became disabled by chronic migraine in 2006. Even though I am a nurse, there was much for me to learn about migraine. I felt overwhelmed by my disease. So, I set out to educate myself, find out what I could do to feel better, and to empower myself. This led me to the National Headache Foundation (NHF) website. 

The NHF has always been a great source of information for people with headache disorders. For example, I found a diary I could use to track my headache days and the meds I was using so I did not over-use.  I found out about triggers and set out to find my own. 

To learn even more information about migraine and headache, I started attending conferences which were designed to educate health care providers caring for people with headache. This is where I met other advocates, including Mary Franklin. Mary is the executive director for the NHF and is also a nurse. We hit it off right away. 

In February of 2018, I was looking for a meaningful way to apply my skills as a patient advocate, and Mary asked me to become the chair of the newly-created Patient Leadership Council. I said yes without hesitation. It was then that I came to realize just how devoted the NHF really is to patients.  Everyone I’ve worked with at the NHF has been tremendously supportive and encouraging. Their patient-centered approach really appeals to me.

As chair of the Patient Leadership Council (PLC), I was asked to find a diverse and committed group of people who would be willing to help the NHF in their mission to “cure headache and end its pain and suffering.” I found 14 men and women from different areas of the country with a wide range of headache disorders. Some are new to advocacy and some are seasoned veterans. We had our first formal meeting in San Francisco in June of 2018.  We learned about the history and mission of the NHF and the role of the PLC, which is to advise the NHF on ways to improve patient awareness, advocacy, education, and research, acting as an in-house focus group. Some of the ideas generated at that meeting are already coming to fruition just one month later, like support for college students struggling with headache disorders.  It’s exciting to be a part of such a dynamic organization. As far as I am concerned, the NHF was the perfect fit for me to utilize my past experience and skills.

Over the past several decades, I have held many positions that have gotten me to this place. I worked with my husband (a physician) as we started his internal medicine practice in Lansing, MI. Not surprisingly, patient education and advocacy were my favorite jobs. After earning bachelor’s and master’s degrees in education and public health, I became a Certified Health Education Specialist (CHES). I worked as an adjunct college professor in health sciences. I was advised to get my PhD, which I nearly did until chronic migraine disease got in my way. This is when I really became a patient advocate, for myself and for others. 

My headache advocacy began in 2011 as a board member, then chair of the now disbanded American Headache and Migraine Association (AHMA). I have been to Washington DC to advocate and lobby my legislators for the past 3 years with Headache on the Hill. I am currently on the boards of the Coalition for Headache and Migraine Patients (CHAMP) and the Alliance for Headache Disorders Advocacy (AHDA).  I am also a volunteer for Miles for Migraine. 

I find it immensely rewarding to put my past experiences into practice and continue to advocate for and educate people. I extend my thanks to the staff and board members of the National Headache Foundation who have welcomed me with open arms and made me feel like part of their family. 

From My Friend Julie Fleck: A Life on "Standby"

Life with migraine is like living on standby. Standby may be viewed as negative, like the standby passenger all disheveled after sleeping three days in the airport.  But standby also describes someone who is ready to deploy, jump into action, and -- last but not least -- a person that is available for emergencies.

So, living with migraine, I stand by, ready and available for immediate action:

• To STAND UP against stigma
• To use my voice in all mediums
• To educate myself to be the best advocate for myself and others and NOT stand by while others try to pull us down



Julie Fleck

• I'll STAND BY with hope for the new treatments in development.

There are over 300 different headache and migraine disorders.  Over 36 million individuals in the US are afflicted with this disease. Many go undiagnosed and untreated.

Standby -- IT'S NOT JUST A HEADACHE!  These attacks are defined by neurological symptoms that may include head pain, sensitivity to light, sound, nausea, vomiting, inability to speak, as well as a myriad of other symptoms.  Some never fully recover from an attack and ride along the roller coaster with daily symptoms.

Migraine has no boundaries.  It affects men, women, boys and girls; all socioeconomic classes and races.  Sadly, many have to STANDBY for adequate treatment and care. They all deserve attack-based treatment paradigms.

There are only 510 headache specialists in the US. That's about one practitioner per 85,000 headache/migraine patients. That's a LOT of people standing by.  I've been fortunate, but I WON'T stand by and be silent. It's hard enough to have an invisible illness, but to feel invisible too?  Well, lI don't want to stand by for that.

I've always said that through all pain there is a gift. You may not see it at first, but it always shows.  I've had many gifts and more will continue.  Stand by me on this adventure.

LET'S MAKE A DIFFERENCE!