Blogger Founds Organization to Give Migraine Patients a Voice

Teri Robert took to the Internet to find information on dealing with her own migraines, but ended up becoming a prolific blogger on the condition and founding an organization to represent migraine patients.

When Teri Robert began searching the Internet in 2000 hoping to find help for her migraines, she didn’t know that she was setting out on a 13-year journey that would lead her to found the American Headache and Migraine Association.

“I was desperate for help for my migraines,” Robert said in a recent interview with Pharmacy Times. “I hit the Internet looking for information, and it just snowballed from there.”

In 2001, Robert, a 59-year-old West Virginian, began blogging and writing patient-education articles for the American Headache Society’s Committee for Headache Education (ACHE), helping to build and support an active online community of migraine and headache disorder patients, physicians, and patient advocates. She began attending national conferences on headaches and migraines, absorbing the latest research on the condition and blogging about it using language the average patient could understand. While attending one such meeting on the inadequacy of migraine and headache research funding, representatives from the National Institutes of Health asked a question she couldn’t ignore.

“They’re saying to me, ‘With other disease states, the patients are very vocal. Where are your patients?’” Robert recalled. “And I knew they were out there, but there wasn’t an organization.” This question, combined with her experience working with her fellow migraine patients for more than a decade, inspired Robert to consider creating an organization to represent migraine and headache patients. “Patients have been wanting a nonprofit that’s actually run by the patients for years,” she said. “This was just listening to patients and knowing we needed this.”

Starting a new nonprofit organization proved to be more challenging than Robert anticipated. With little direction and extremely limited funds, she reached out to the many connections she had made over the years in the migraine community. Thinking that her goal might be achievable with the help of an existing organization, she collaborated with ACHE chairman Paul Winner, DO, to write a proposal that was presented to the American Headache Society board in June 2012.

“Everyone on the ACHE committee was so excited,” Robert said. “Instead of me presenting it to the board as an individual, they got behind it and submitted it for me.”

Robert also had help and support from her fellow migraine and headache bloggers Ellen Schnakenberg, whose writing can be found at Migraine.com and Migraine Interrupted, and Diana Lee, whose writing can be found at Somebody Heal Me. The American Headache Society board approved their proposal, and this March the American Headache and Migraine Association (AHMA) was officially formed.

“They felt we were a perfect fit,” Robert said. “So we are kind of the patient branch of the American Headache Society.”

As a new organization, AHMA’s main focus has been on developing programs based on what patients want and need as expressed through member surveys. The organization plans to send out newsletters, continue patient education in collaboration with ACHE through blogs and webinars, and start a support program that will fit the needs of both chronic and episodic migraine and headache sufferers.

The association is also planning its first conference, which will take place on November 24, 2013, in Scottsdale, Arizona. The conference will feature physician and patient speakers as well as a special session for family members and caretakers of migraine and headache patients. “When one person in the family has one of these disorders, really the whole family has it,” Robert said. “And I don’t think there’s enough recognition of that and enough support for the family.”

As the organization grows, Robert hopes to work toward building a stronger forum for patients’ voices on and offline in order to help everyone affected by migraine and headache disorders. “It’s the most rewarding work I’ve ever done because every day I know I’ve been able to help someone who’s hurting and in trouble like I have been,” she said. “And I know we’re not going to help necessarily every person, but we’ve got to help as many as possible.”

For more information on the American Headache and Migraine Association, visit http://ahma.memberclicks.net/. In addition to her work as a blogger and founder of the AHMA, Robert also launched the “Putting Our Heads Together” poetry contest in 2001 to encourage migraine patients and their loved ones to creatively communicate their experience with the condition.