Category: Advocacy and Migraine
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Headache on the Hill 2020; Jamie’s Story
Originally seen on Chronic Migraine Warrior, Written by Jamie Valendy Reposted by Chronic Migraine Awareness, Inc. This week, I joined a group of 174 advocates from 45 states in Washington, DC at the 13th annual Headache on the Hill lobbying initiative, which is organized by the Alliance for Headache Disorders Advocacy (AHDA). This was my second time participating…
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The Burden of Migraine #HOH2020; Donna’s Story
Originally posted on MyBeautifulMigraine, Written by Donna Kobayashi, Reposted by Chronic Migraine Awareness, Inc. What was our mission? Addressing and ending the headache doctor shortage. The US has less than 1/6 the number of headache doctors it needs. By passing bill H.R.3414 and S.2892 and amending language to “approved headache fellowships,” instead of “residencies.” With so few specialists,…
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Headache on the Hill 2020; Nikki’s Story
Originally posted on Migraine Chronicles, Written by Nikki, Reposted by Chronic Migraine Awareness, Inc. This year I was honored to attend the 13th annual Headache on the Hill as a patient advocate. I traveled to Washington D.C. along with 179 patient advocates, caregivers, and headache physicians to advocate for a common ‘“ask.” Although we all share a…
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Headache on the Hill 2020
Written by Kristen Estep for Chronic Migraine Awareness, Inc. Wow!! What an awesome experience! We had an all time high attendance with 179 advocates from 45 states being represented. I also don’t want to forget all of the caregivers who were there to support their loved ones, including Gunner the service dog. Their support was…
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The Patient Doctor Relationship
Written by Deborah Bloom, for Chronic Migraine Awareness Inc. How do you feel before seeing a new neurologist or headache specialist? What thoughts go through your head as you anticipate going to meet a new neurologist or headache specialist? For me it had become thoughts like, will they treat me with respect and compassion? Will…
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ICER Midwest review
On January 23, 2020 the ICER review board met in a public meeting, along with doctors and patient advocates to determine the efficacy and availability of the newest class of migraine medications. There was much testimony given about the patient trials and results of those. Concurrently, there was testimony given about prescriber limits and cost…
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HOH2020 It’s Almost Here!!
Orgininally posted on SparklyAura.com Headache on the Hill is fast approaching and I am so honored to be attending. I am looking forward to not only meeting my fellow migraine warriors, but also learning from them. I am newer to advocating for migraine and this opportunity is monumental for me. This sounds kind of weird…
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That Thing Lizzie Did
Originally posted on MyBeautifulMigraine January 16, 2018 Written by Donna Kobayashi It was ~2009 and I was still learning to cope with my migraine changes. I was very clueless about Chronic Migraine as I knew no one with the disease. I was fighting my pants off against it; in the Botox regimen, taking oral preventatives,…
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Life After the Semicolon; Living with Chronic Migraine, Greta continues her story
“This moment brought so much hope into my life that I broke my suicide pact and became determined to live.
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My Journey to Empowerment
September 14, 2018 By Jeannette – Empowerment is a concept that is often discussed during Pain Awareness Month. One definition of empowerment is “the process of becoming stronger and more confident, especially in controlling one’s life and claiming one’s rights.” This sounds like a wonderful goal, but how do we accomplish this as individuals and…
Chronic Migraine Awareness 