Boston Marathon Bombing Survivor, Lynn Julian Crisci, Advocates With Massachusetts Congressional Delegation
Mar 2, 2023
Boston, Massachusetts Mar 1, 2023 (Issuewire.com) - Boston Marathon Bombing Survivor, Lynn Julian Crisci, Advocates With Massachusetts Congressional Delegation
Lynn Julian, an injured survivor of the Boston Marathon bombing, living with brain injury, neck/back injuries, chronic migraine, hearing loss, PTSD, Long COVID, tick-borne illnesses, and nine rare diseases and conditions, has found a greater sense of purpose in being an Ambassador for many organizations: US Pain Foundation (Founding Massachusetts Ambassador since 2012); Strength To Strength (Patient Advisory Board since 2016); Everylife Foundation and RDLA (Rare Disease Legislative Advocate since 2019); American Migraine Foundation (Ambassador/Moderator); Alliance For Headache Disorders Advocacy (Headache On The Hill Advocate since 2021); Center For Lyme Action (Lyme Fly-In Advocate since 2021); Health Union (Writer/Moderator since 2022); Ravel Health (Ambassador since 2022). Lynn speaks with representatives of the Massachusetts congressional delegation, as a patient, Patient Advocate, and Ambassador, annually in February and August, about over a dozen pieces of legislation affecting 40+ million Americans who live with headache disorders, migraine disease, rare diseases, Lyme Disease, and 300+ tick-borne illnesses.
This February, Julian joined 600+ advocates, for both Alliance for Headache Disorders Advocacy (AHDA) and Center For Lyme Action (CLA), from 48 states to conduct virtual meetings with staff of Senators Elizabeth Warren and Edward Markey, as well as Representatives Seth Moulton, Bill Keating and Richard Neal, and Congresswoman Ayanna Pressley. As a survivor of terrorism, she also recently spoke out in support of the Representative's Post Disaster Mental Health Response Act.
"It is always an honor to advocate, share my story, and speak up, on behalf of 40+ million Americans, like me, who live with headache disorders, migraine disease, tick-borne illnesses, and/or rare diseases," said Julian. The passionate Patient Advocate, "Disability Experience Consultant," is also an Award Winning musician, published author, and Featured Speaker on "The Secret To Resilience." "I enjoy joining my fellow Bostonian advocates, to create awareness for important legislation funding research and treatments in these annual meetings, and I appreciate the time and effort of our congressional representatives in supporting them. Anyone can volunteer to be an ambassador, or legislative advocate, and join me next year!"
In preparation, Julian completed virtual training, to learn about over a dozen pieces of legislation, and conduct over a dozen meetings, over the course of several weeks. Senators and representatives were informed, and educated, about various "asks," to fund research and treatments, for headache disorders, such as "Covid headaches," migraine disease, tickborne OK so illnesses, and rare diseases. For instance, lawmakers were encouraged to sign a letter to the U.S. Department of Education requesting the Office of Special Education and Rehabilitative Services to issue a formal guidance memorandum affirming the potential eligibility of children with severe headache disorders under the "Other Health Impairments" category of the IDEA Act statutes and regulations should their health conditions adversely impact their educational performance in school.
Congressional representatives were also asked by HOH advocates to consider cosponsoring the Care for Long COVID Act, which is being reintroduced in the 118th Congress. In addition, Julian asked them to join a new Congressional Headache Caucus to work with his colleagues on bipartisan issues impacting those with headache and migraine issues.
About AHDA: The Alliance for Headache Disorders Advocacy (AHDA) is an umbrella organization uniting headache advocates nationwide. Its ongoing mission is to make life better for the millions of Americans living with headache disorders in our country. Founded in 2008, the AHDA is a nonprofit supported by member contributions and individual donors.
About Headache on Hill: Headache on the Hill (HOH) is an annual advocacy event organized by the AHDA. The AHDA brings together health professionals, headache advocates, patients, caregivers, and researchers in support of the common goal to make life better for all those living with or otherwise impacted by headache disorders in the United States. HOH "asks" are typically focused on improving awareness about headache disorders and the need for greater research funding.
Media Contact
Lynn Julian
617-851-7298
135 Clarendon St., Apt 5D
Source :Everylife Foundation; Alliance For Headache Disorders Advocacy; Center For Lyme Action
This article was originally published by IssueWire. Read the original article here.
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