Hello Advocates,
We are thrilled to welcome Ayah Kenj Halabi as our new Public Policy and Advocacy Intern! Ayah’s role will focus on providing administrative support for our advocacy activities.
Ayah comes to NAF as a graduate student from the University of Wisconsin – Madison – Lafollette School of Public Affairs. She has a strong background in analytical and outreach skills and passion for public service through political advocacy and policy work. Please join me in welcoming Ayah!
Lori Shogren
Community Program and Services Director
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“I am so excited to be joining your team and becoming a part of an organization that participates in such fulfilling work. I look forward to getting to know our advocates and participating in this year’s Hill Day!” - Ayah Kenj Halabi
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Advocacy on Hill Day
by Greg Gary
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I was excited to participate in the 2022 Hill Day advocacy because it is to raise awareness of Cerebellar Ataxia by congressional leaders that hopefully endorse funding in the medical research of Cerebellar Ataxia. I didn't know what to expect when Hill Day 2022 arrived. There were 4 of us to talk with federal government leaders representing Texas. Three of us had/have Ataxia, and one person is a full-time researcher of Cerebellar Ataxia. The congresspeople we talked with via Zoom, were all very nice and seemed to have a sincere interest in hearing what we were talking about and helping with funding. My understanding is that the awareness of Cerebellar Ataxia has greatly improved, but that awareness is not a large portion of our society as a whole.
I have lived with this progressive disease since 2009. I strongly feel that to say that Cerebellar Ataxia is disruptive is an understatement. For years, the person afflicted with this disease does not understand what's happening to their body, and people around them understand even less. The awareness that Cerebellar Ataxia is destructive and affects many people is essential to funding research that has shown positive signs in understanding and treating the disease. I am excited to participate in Hill Day 2023. I see it as a great opportunity to be involved in the awareness that research funding is greatly needed to better understand this destructive disease.
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Join us for this year’s United Against Ataxia Virtual Hill Day on September 20th. Registration opens on August 1! |
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Letter Submitted to Congress Expressing Alarm at Proposed Cuts |
On May 15, the National Ataxia Foundation joined a letter signed by 760 organizations that was sent to congressional leadership in both chambers. This letter expressed concern over the proposed cuts to non-defense programs (NDD), which would slash the budgets of many research and healthcare operations. The signers also note that many funding levels have still not recovered from the sequestration in 2011. Congress is urged to reject these proposed spending cuts and instead reinvigorate its commitment to investing in these vital programs.
On May 31st The Fiscal Responsibility Act of 2023, was passed by Congress. The legislation establishes topline spending limits for FY24 and FY25 which will hamper efforts to increase funding for key agencies, such as FDA, NIH, and CDC. Exact spending levels will be appropriated by relevant subcommittees.
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Pacific Northwest Rare Disease Fair
by Sherry McLoughlin, WWASG Leader
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NAF’s Program and Services Director, Lori Shogren, and WWASG Support Group members Paula Wood, Diane Cross, and Sherry McLaughlin represented NAF at the Pacific Northwest Rare Disease Fair. Christina Rose Newell, our new Yeti Support Group (Northwest Washington) leader and a licensed mental health counselor with Ataxia, was a discussion group leader for the newly formed Mental Health Task Force. Learn more about the event and our experiences. |
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NAF Celebrates NORDs 40th Anniversary at the Annual Living Rare, Living Stronger Patient and Family-Focused Forum
by Sarah Pilato, NAF Programs Coordinator
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Last month I had the incredible privilege to attend the National Organization for Rare Disorders Patient and Family Forum as both a representative of the National Ataxia Foundation and a rare disorder patient myself. I was blown away by all of the content and speakers that I got to watch. It was great to see such a variety of programming that spoke to everything from transitioning through different life stages, and the importance of research involvement, and mental health care.
While I got to meet a ton of amazing people over my weekend at the NORD Forum, a particular highlight was accidentally sitting down at the same breakfast table as Pangkong Fox, the new Science Engagement Director for the CACNA1A Foundation! We instantly connected over our shared goals in the fight against ataxia and plan to continue collaborating in the future! Together, we teamed up and had a great time educating other attendees about ataxia and discussing how we could bring back what we learned at the NORD Forum to our own organizations.
I highly recommend this opportunity to other rare disorder patients and hope to continue attending in future years!
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Awareness Grows for National Brain Donation Day |
May 7 th is National Brain Donation Day. Efforts are underway to designate this day in Congress! Neuroscience Caucus Chair, Rep. Earl Bluemenaur (D-OR-3) and co-lead Rep. Brian Fitzpatrick (R-PA-1) partnered to reintroduce the resolution ( H.Res. 361). NAF joined nearly two dozen patient advocacy and other research organizations sign on to encourage other representatives to support the resolution. Lack of awareness is one of the biggest barriers to brain donation, so a National Brain Donation Awareness Day is one more tool we can use to encourage people to consider this precious gift. Learn more about NAF’s Brain Donation Program https://www.ataxia.org/braindonation/. |
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NYC Advocates Make Subways More Accessible
Reported by New York Able Newspaper
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Advocates rallied recently in front of the 60 Centre Street courthouse in Manhattan before New York State Judge Shlomo Hagler approved settlements of two lawsuits advocates made with the MTA in subway-accessibility cases. Presently, only about a quarter of stations are usable by people with disabilities affecting their mobility, but under the terms of the agreement, the MTA will add elevators or ramps to create a stair free path of travel to at least 95 percent of the system’s currently inaccessible subway stations by 2055. |
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Great News Out of Washington
Reported by MDA
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We’re happy to share that the House Transportation and Infrastructure Committee unanimously passed its FAA Reauthorization bill! Together, with its amendments, this bill includes the most transformative reforms to make air travel more accessible since the Air Carrier Access Act of 1986. The next step is for the bill to go to the House floor.
This was possible because of people like you who raised their voices. And for that, thank you!
However, our work is not done yet. The Senate Commerce Committee will mark-up its own FAA reauthorization bill and we need your help. Though the Senate bill would be a significant improvement to the current system, it should go further in improving air travel for people living with a disability.
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The Safe Step Act (S. 652) has been reintroduced in the Senate! Ask your Senators to cosponsor this important legislation today! The National Ataxia Foundation and 213 other organizations signed a letter in support of Bill S. 652 Safe Step Act. More than half of state legislatures have already taken action to enact stronger patient protections around the use of step therapy in state-regulated health plans. Congress must now do the same for those covered by federally-regulated health plans by passing the Safe Step Act (S. 652).
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Advocates, ask your Member of Congress to sign the letter to the FDA. Take action and ask your Members of Congress to join the Co-chairs of the Congressional Rare Disease Caucus in a sign-on letter requesting the formation of an internal FDA task force to review and inform agency-wide rare disease activities. Use our pre-filled form here. It takes less than a minute to complete.The FDA has developed multiple programs to help strengthen its rare disease infrastructure. However, the impact of those new initiatives is not yet consistently felt by the community. An internal task force would evaluate and inform the FDA’s rare disease activities and processes that are in place to ensure they benefit the entirety of the community.
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Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act (S.526) – Take Action! Please encourage your Senators to cosponsor the BENEFIT Act. This legislation will amend the Food, Drug and Cosmetic Act (FDCA) to ensure that patient experience, PFDD and related data – including information developed by a product sponsor or a third party such as a patient advocacy organization or academic institution – be considered as part of the risk-benefit assessment.
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Ask Legislators to Support Funding for the BRAIN Initiative. The American Brain Coalition is asking for your help in advocating for support of the BRAIN Initiative. Further investment in this pioneering research brings us closer to better treatments, prevention, and cures of brain diseases and disorders. Congress invested an unprecedented $680 million in the BRAIN Initiative in Fiscal Year 2023, but continued research requires continued investment. Congress needs to hear from you! Contact your legislator.
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Reported by EveryLife Foundation
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RARE Act (S.1214) and Safe Step Act (H.R 2630/S. 652): On May 11th, the RARE Act (S.1214) and Safe Step Act (H.R. 2630/S. 652) were both unanimously voted out of the Health, Education, Labor, and Pension (HELP) Committee. The RARE Act specifies that the seven-year market exclusivity period for drugs for rare diseases or conditions (i.e., orphan drug exclusivity period) prohibits the approval of other drugs for the same approved use or indication with respect to the disease or condition rather than applying to all uses within the disease or condition. The Safe Step Act requires a group health plan to establish an exception to medication step-therapy protocol in specified cases.
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Protect Telehealth Access Act: On May 17, 2023, Representative Chris Pappas (NH-1) and Senator Joe Manchin, III (WV) introduced H.R. 3440/S. 1636 to amend the Social Security Act to protect access to telehealth services under the Medicare Program. This would ensure continued access to telehealth services such as virtual care visits, mental health support, and more for those enrolled in Medicare beyond the COVID-19 pandemic. Click here to learn more.
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NIH Clinical Trial Diversity Act: On May 18, 2023, Representative Robin Kelly (IL-2) and Senator Robert Menendez (NJ) introduced the NIH Clinical Trial Diversity Act, H.R. 3503/S. 1701. This bill would direct the Secretary of the Department of Health and Human Services and Director of the National Institutes of Health to take steps to increase clinical trial diversity. The hope is to ensure future clinical trials better represent the growing diversity of the United States such as representing sex, ethnicity, preexisting conditions, and other factors. Click here to learn more.
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Safe Interactions Act: On May 18, 2023, Representative Susan Wild (PA-7) and Senator Robert P. Casey, Jr. (PA) introduced the Safe Interactions Act, H.R. 3550/S. 1731. This bill would provide grants to enable nonprofit disability organizations to develop training programs that support safe interactions between law enforcement officers and individuals with disabilities. These programs aim to train law enforcement on the wide array of disabilities they may encounter in their communities and how to best approach the encounter. Click here to learn more.
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Medicaid VBPs for Patients (MVP) Act (H.R. 2666) passed out of the Energy and Commerce Committee on May 24th as it now moves to the full House for a vote. The bill would allow “for the use of varying best price points under value-based purchasing arrangements for purposes of the Medicaid Drug Rebate Program.” It would also require the GAO to study the impact of value-based purchasing on federal healthcare programs.
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Access to Physicians Across State Lines: The Interstate Medical Licensure Compact (IMLC) is an agreement among participating U.S. states to streamline the licensing process for physicians who want to practice in multiple states. The compact increases patient access to expert care in person and via telemedicine, which greatly benefits those in underserved or rural communities, individuals attempting to reach expert care from a distance, and patients with complex medical conditions who are unable to travel. To learn about current state efforts to streamline medical licensing and improve access to physicians – including efforts in Hawaii, Missouri, and North Carolina – click here
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LEAP into Advocacy Virtual Summit
The E.WE Foundation will host their 2023 LEAP into Advocacy Virtual Summit on Thursday, June 29th, 10:00am – 2:30pm CST. The LEAP into Advocacy Summit brings together rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies to discuss the latest rare disease innovations, patient advocacy, public policy, and actionable strategies to accelerate change
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Rare Across America 2023
August 7th through the 18th. During this time, rare disease advocates can meet with their Members of Congress at the Member’s in-state, in-district office. All House meetings will be held in-person at the Representative’s district office, and all Senate meetings will be virtual. Registration closes July 11th - Register here. Webinar Trainings: To register, click here.
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Rally for Medical Research Hill Day
Thursday, September 14, 2023 in Washington DC, with the “Rally Hill Day” reception taking place during the evening of Wednesday, September 13, 2023. This initiative is an opportunity for supporters from the 400 participating organizations to join together to speak with one voice about making NIH a national priority
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Global Genes Rare Advocacy Summit
Tuesday, September 19, 2023 - Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Advocacy Summit. Sessions provide attendees with insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can take home and implement immediately to accelerate change. This year, the Summit will be a hybrid event, with meetings, workshops, sessions in San Diego, California, and educational sessions live-streamed online.
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United Against Ataxia Virtual Hill Day
September 20, 2023
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Registration opens: August 1, 2023 |
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Regional Advocacy Opportunity |
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June meetings of NORD’s Regional Policy & Advocacy Taskforces!
These meetings provide a platform for individuals to work with other rare disease advocates in their region to advance policies that benefit the greater rare disease community. The June Regional Taskforce meetings will take place at the time and dates listed below:
Region A: Wednesday, 6/28 at 1 PM MST (12 PM PST)
Washington, Oregon, California, Idaho, Nevada, Utah, Arizona, Montana, Wyoming, Colorado, New Mexico, Alaska, Hawaii
Region B: Thursday, 6/29 at 2 PM CST (1 PM MST)
North Dakota, South Dakota, Nebraska, Kansas, Oklahoma, Texas, Minnesota, Iowa, Missouri, Arkansas, Louisiana, Wisconsin, Illinois
Region C: Monday, 6/26 at 12 PM EST (11 AM CST)
Michigan, Indiana, Ohio, Kentucky, West Virginia, Tennessee, North Carolina, South Carolina, Mississippi, Alabama, Georgia, Florida
Region D: Thursday, 6/29 at 11 AM EST
Virginia, District of Columbia, Maryland, Delaware, New Jersey, Pennsylvania, New York, Connecticut, Rhode Island, Massachusetts, Vermont, New Hampshire, Maine
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Advocacy Training & Opportunities |
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These resources by the Rare Disease Legislative Advocates (RDLA) are designed to help rare disease patients, parents, caregivers and others to make their voices heard. If you would like more information about a topic or have tools to share, please contact us at naf@ataxia.org. |
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Find Your Local Representatives: |
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