Chronic Migraine, Reader Stories

Migraine Stories: 14-Year-Old Raises $12,110 for Migraine Research

Daisy Griffin, a 14-year-old who has chronic migraine, raised $12,110 for migraine research by sailing alone across the Long Island Sound. She will donate 100% of the money raised to the Migraine Research Foundation.

Daisy’s Migraine Story

Daisy has had severedaisy_griffin_sail migraine attacks since she was four, which have progressed to chronic. Like so many of us, she has tried a slew of treatments, from medications to supplements to yoga to biofeedback. She’s had two in-patient hospital stays to treat migraine. Thanks to a couple preventive medications, she’s feeling better now, but still has a headache every day and migraine attacks at least a few days a week.

When I asked what she wished people understood about migraine, she said, “I really wish that people would get that I’m not just having a headache. I have a headache all the time and a few times a week it becomes a severe migraine. A lot of times people tell me how lucky I am that I miss school all the time. I actually feel lucky when I can make it to school, or even when I can get out of bed.”

Sailing for Migraine Research

Daisy has been sailing avidly since she was eight years old. It’s one of her great passions and she fears chronic migraine could force her to give up. Since she’s been feeling better, she sees this sailing trip across the sound as “sort of like me saying: Take that migraines! I can still do what I love!”

Daisy sailed an 18-foot spinnaker, the largest boat she’s ever sailed by herself. The sailing itself was much easier than she expected because the wind wasn’t very strong. But little wind also made for, in Daisy’s words, a “loooong” trip.

Having chronic migraine meant that Daisy’s trip could have be derailed by the ever-present threat of another attack. She was hopeful that even if she had a migraine attack, sailing would distract and relax her, as it usually does. To prepare, she made sure she got enough sleep and drank a lot of water before the trip. It worked! Daisy’s head hurt a bit, but she didn’t have a migraine attack. (Her father trailed at in a motorboat, so she could radio him for help if she had an attack. But she didn’t need to.)

Fundraising

In addition to the sailing trip, Daisy has raised awareness and donations through a booth at local fair (where she hosted a migraine trivia game) and a lemonade stand with her siblings and cousins. She wrote to groups and individuals to solicit donations and publicize her trip. A generous donor agreed to double the amount that she raised, which brought the total to $12,110.

You can still donate to Daisy’s campaign and the Migraine Research Foundation through CrowdRise.

Way to Go, Daisy!

I’ve never met Daisy, but I’m tearing up as I write about her accomplishments. Much of her young life has been dominated by migraine. Instead of trying to forget about migraine as soon as she felt better (as most of us would have done whether 14 or 57), she threw her newfound energy into raising awareness and funding for research. Her efforts took remarkable dedication and resourcefulness. It’s an impressive feat at any age.

Learn more about Daisy and her trip on her website, Sail for Migraine Research.

Doctors, Resources, Treatment

Directories of Headache Specialists for Adults, Children

The Migraine Research Foundation has released updated lists of doctors certified in headache management, including a list of doctors who treat children. Anyone can hang a shingle saying they are a headache specialist, even without any special training. MRF’s lists only include doctors who have passed a certification exam verifying their knowledge of headache medicine. Check out this excellent resource if you’re looking for a specialist to treat your (or your child’s) migraine or headache disorder.

 

Community, News & Research, Society, Treatment

Migraine Research Foundation Announces Recipients of 2011 Grants

The Migraine Research Foundation, which raises funds to research the causes and mechanisms of migraine, improve treatments, and find a cure for this little-understood but debilitating illness, has announced the recipients of their 2011 grants. From the MRF:

This year’s grantees will explore ground-breaking inquiries in the areas of chronic migraine treatment, genetic sequencing and basic science. In addition to these research projects, MRF has awarded a grant to award-winning filmmakers Jacki Ochs and Susanna Styron to help fund their feature-length documentary, The Migraine Project.

The four grants were selected from 34 proposals submitted from around the world and represent innovative approaches to unraveling the mysteries of migraine in different ways.

MRF’s 2011 research grantees are:

Andrea Antal, PhD and Walter Paulus, MD
Georg-August University,Göttingen, Germany
Transcranial Alternating Current Stimulation for the  Acute Treatment of Migraine
Studying the effects of inhibitory transcranial alternating current stimulation as an effective non-pharmaceutical acute treatment for chronic migraine.

F. Michael Cutrer, MD
The Mayo Clinic, Rochester, MN
Whole Exome Sequencing as a Strategy for Gene Discovery in a Large Well Characterized Family with Migraine
Using the newest sequencing technology for gene discovery in migraine.

Michael S. Gold, PhD
University of Pittsburgh, Pennsylvania
Calcium Activated Chloride Channels as a Novel Target for the Treatment of Migraine
Determining the molecular identity of the ion channels that underlie pain receptor sensitization and blocking them as a first step in the development of a novel target for migraine treatment.

Jacki Ochs and Susanna Styron
Human Arts Association, New York, NY
The Migraine Project

A feature length documentary designed to increase awareness and understanding of migraine for a world-wide audience.

News & Research, Treatment

Migraine Research Foundation Donations Doubled This Week

The Migraine Research Foundation raises funds to research the causes and mechanisms of migraine, improve treatments, and find a cure for this little-understood but debilitating illness. Until December 31, 2011, all donations will be matched dollar-for-dollar thanks to a generous anonymous donor. Because all of the foundation’s costs are underwritten, 100% of your donation will go to research. Even a $5 donation, which will be doubled to $10 this week, helps further important research into this complicated neurological illness.

Learn about research the Migraine Research Foundation has funded and donate here.