In this issue:
U.S. Pain representatives take part in federal task force's final meeting | National Migraine & Headache Awareness Month is here! | INvisible Project: Migraine third edition now available | Kids and families connect at Pediatric Pain Warriors retreat | How did we serve the pain community last year? |
and more.
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U.S. Pain representatives take part in federal task force's final meeting
The Pain Management Best Practices Inter-Agency Task Force, which finalized its report last week, held its final public meeting on May 9 and 10.
Read more.
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National Migraine & Headache Awareness Month is here!
From attending online education events, to participating in social media campaigns, to obtaining proclamations, there are a number of ways you can take part.
Read more.
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INvisible Project: Migraine third edition now available
This latest issue, released in conjunction with National Migraine & Headache Awareness Month, profiles 10 individuals living with headache and migraine diseases.
Read more.
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Kids and families connect at second Pediatric Pain Warrior retreat
Over Memorial Day weekend, 90 kids with pain and their family members gathered for a weekend of support, education, and inspiration in San Antonio, TX
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Read more.
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How did we serve the pain community last year?
U.S. Pain Foundation's 2018 annual report, which includes a letter from the interim CEO, statistics from the year, collages, and testimonials from real patients, is now available online.
Check it out.
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Pain Warrior of the Month:
Tom Sayen
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City & state:
Philadelphia, PA
Pain warrior role:
U.S. Pain advocate since 2018
Health conditions:
Chronic cluster disease, intractable migraine disease, and advanced fibromyalgia
Favorite tip for others with chronic pain:
"
Accept that your pain is inevitable and unpredictable and believe that you are a not any less of a person for it. You are not your illness; you are a valuable human being. Keep your friends close. I recommend deep breathing 'breaks' several times a day; establish a 'count' (breathe in, hold it, breathe out) that works for you, mine is 6-6-8. Also, practice mindfulness toward the end of the day, I find a calm and clear mind promotes better sleep."
Fun fact about you: "I attended the very first 'Earth Day' in Philadelphia on April 22, 1970."
Since the early 1990s, Tom Sayen has been an active advocate for headache and migraine disease as well as a volunteer for the MS Society. His chronic cluster disease and migraine pain provided him with a new perspective of the world and he wanted to help others who, too, experienced disability. Tom says: "You can either do nothing or you can do something; I choose to do something." This year alone, Tom has attended Headache on the Hill, RetreatMigraine, multiple headache conferences, and volunteered at several MS Society events. More about Tom's pain journey and advocacy work can be found in the INvisible Project's Migraine 3rd Edition.
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Upcoming events
- June 1: National Migraine & Headache Awareness Month kicks off. For a full listing of events, click here.
- June 3-6: U.S. Pain at BIO conference and Interim CEO Nicole Hemmenway speaking on June 4 panel in Philadelphia, PA
- June 4: Support group meeting in Tucson, AZ (Pascua Yaqui Tribe); held weekly on Tuesdays
- June 5: Support group meeting in Tucson, AZ, and Bellingham, WA
- June 6: Afternoon Pain Connection Live conference call support group and support group meeting in Pell, AL
- June 8: Ehlers-Danlos syndrome panel in Warwick, RI
- June 10: Support group meeting in Rockville, MD
- June 11: Support group meetings in Costa Mesa, CA, Concord, NH, and Detroit, MI
- June 12: Support group meeting in Thousand Oaks, CA
- June 13: "What migraine doctors and patients can learn from one another," evening Pain Connection Live conference call support group, and a support group meeting in Madison, WI
- June 14: Support group meetings in Arlington, MA, San Francisco, CA, and Oakhurst, NJ
- June 19: "Overcoming a brain in pain: Advice from migraine strategist Lindsay Weitzel, PhD," and support group meetings in Sacramento, CA, Bellingham, WA, and Middletown, CT
- June 20: Morning Pain Connection Live conference call support group
- June 25: Support group meeting in Madison, WI
- June 28: Support group meeting in San Francisco, CA
- June 29: Saturday Pain Connection Live conference call support group
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