A Note from NAF's Community Services Director |
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After another very successful United Against Ataxia Hill Day in partnership with FARA, we continue to monitor the delays and progress of the issues that so many of you have helped us advocate for during Hill Day. Here are a few updates as we head into the end of 2023.
Although we have urged Members of Congress to pass the FY24 budget in a timely manner, there continue to be delays. A continuing resolution (CR) successfully passed both the House and Senate, preventing a government shutdown. The CR extends funding for the Ag-FDA, Energy & Water, MilCon-VA, and THUD appropriations bills until January 19, 2024, and for the remaining eight bills, including Labor-HHS, Defense, and CJS, until February 2, 2024. Our government agencies really need to get the budget passed. CRs directly impact the work of the federal research institutions we depend on. Also, the Defense bill needs to pass with Hereditary Ataxia listed as an eligible condition within the CDMRP research grant program, so we are closely watching the progress of the defense appropriations bill.
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The Federal Aviation Administration (FAA) Reauthorization of 2023 is a bill that we informed Members provides critically needed air travel reforms. As part of the deal to keep the government open, Congress approved a three-month extension to reauthorize the Federal Aviation Act (FAA). The new December 31st deadline will give Members of Congress more weeks to work on a comprehensive FAA reauthorization bill. Though we are disappointed by the delay, we are still hopeful that the Senate will pass their version soon, reconcile it with the House version that passed earlier this year, and then send it to the President for his signature.
We obtained more cosponsors for the (BENEFIT) Better Empowerment Now to Enhance Framework and Improve Treatments Act (S. 526 / H.R. 1092). This bill is still in need of more cosponsors in the House and Senate! Click here to send a letter to your Representative and Senators now.
Thank you all for the impact you continue to make by sharing your stories and being determined advocates to end ataxia. I look forward to continuing to push our efforts forward with you all in the New Year!
Have a Happy Holiday Season!
Lori Shogren
P.S. SAVE The DATE! Next Year’s United Against Ataxia Hill Day and International Ataxia Awareness Day (IAAD) is on September 25, 2024
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My Rewarding Hill Day 2023 Experience
by Mary Choi Smith
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Mary shares her story as a SCA6 advocate participating in NAF’s Hill Day 2023, influencing legislators about hereditary Ataxia. She highlights the well-organized preparation, engaging Zoom meetings, and the positive impact on legislation supporting the rare disease community. A compelling read for those interested in advocacy and making a difference in the rare disease landscape! |
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NAF Board Member John Mauro Recognized as a Rare Disease Difference Maker by Engage Health |
Engage Health's "Rare Disease Difference Maker" program acknowledges and encourages grassroots efforts in the rare disease space and highlights the work of individuals. John was nominated for the difference that he makes in the Ataxia community. He has a long history of volunteering to bring awareness, offering support to others, and raising money to support NAF's mission. Congratulations John! Thank you for all that you do for NAF and our community! Check out the full article.
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170 Patient Organizations Come Together to Make Their Voices Heard |
NAF joined 170 patient advocacy organizations that signed onto NORD's Inflation Reduction Act (IRA) technical corrections letter of support to Congress, created in partnership with the EveryLife Foundation. The letter urges Congress to make two small, but significant, technical corrections to the IRA's orphan drug exclusion.
These corrections are essential to help preserve future research and drug development for rare diseases. The two changes the 170 co-signing organizations seek to amend to the IRA’s orphan provisions are:
1. Clarify that the number of orphan designations FDA granted a product has no effect on its eligibility for the IRA’s orphan drug exclusion.
2. Maintain the purpose of the orphan drug exclusion by clarifying an orphan product becomes negotiation-eligible 7 or 11 years after it loses that exclusion.
Stay tuned for future opportunities to engage on this important issue, especially in the new year as we continue to push Congress to make these changes in early 2024!
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Senators Recognized as Ataxia Research Campions Award |
NAF and FARA awarded Senator Shelley Moore Capito (WV) and Senator Debbie Stabenow (MI) with the Ataxia Research Champion award. This award is given to members of Congress who have shown unwavering support for research into Ataxia treatments and cures.
"Ataxia is a heartbreaking disease for patients, families, and caregivers. NAF and FARA are incredible partners in the fight to end this disease," said Senator Stabenow. "I'm honored to receive the Ataxia Research Champion award."
"Establishing National Ataxia Awareness Day will allow us to raise awareness among the American public and shine a light on those impacted," Senator Capito said. "Moving forward, we must continue our dedication towards improving diagnosis and treatment and ultimately find a cure.:
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National Family Caregivers Month Held in November |
November was National Family Caregivers Month! The President honored family caregivers for all they do for the nation with a Presidential Proclamation. The President said: " Let us celebrate and honor our caregivers and renew our efforts to protect their dignity, health, and security. Because when we care for our caregivers, we honor our American ideals and move closer to a future where no one in this Nation is left behind." You can read the full text of the Presidential Proclamation HERE, as well as view more about Caregivers Action Network’s 2023 National Family Caregivers Month celebration here. Thank you, Caregivers! |
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SSI Penalty Elimination Act
Since 1984, the asset limits for Supplemental Security Income (SSI) have remained at $2,000 for individuals and $4,000 for couples, penalizing beneficiaries for obtaining employment or saving money. The Muscular Dystrophy Association (MDA) is pushing for the SSI Penalty Elimination Act, which proposes to raise these limits to $10,000 for individuals and $20,000 for couples and adjust them for future inflation. Advocates argue that the current limits are outdated and contribute to financial insecurity for over 8 million Americans with disabilities who depend on SSI. Let's urge Congress to pass the reform for better financial stability and independence.
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PROTECT RARE ACT (H.R.6904)
The PROTECT RARE ACT (H.R.6904) has been introduced. This bill the Providing Realistic Opportunity to Equal and Comparable Treatment for Rare (PROTECT Rare) Act makes it easier for rare disease patients to get the treatments they need - just like those living with more common conditions. It’s not about ‘special treatment.’ It’s about the reality of rare disease patients having to convince Medicare and Medicaid to consider our treatments ‘medically necessary’ and we’re caught in a cycle of appeals and denials.
Now it's your turn!
Ask your Representative and Senator to support the PROTECT Rare Act today...
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ADA Compliance for Nashville Sidewalks
Fellow Community Member, Fiona Cauley has organized this petition on social media for accessible sidewalks and ramps in Nashville. Let’s join Fiona’s efforts for a more accessible Nashville! Click the link below to join the petition.
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HELP Copays ACT
The Cystic Fibrosis Foundation asks advocates to urge their Members of Congress to cosponsor the HELP Copays Act, H.R 830/S. 1375. The HELP Copays Act would ensure that all copay assistance, like copay cards, count toward the patient’s deductible and out of pocket maximum cost sharing requirements. Click here to learn more and send a pre-written email to your Members of Congress.
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Ask Your Members of Congress to Join the Caucus
Invite your Member of Congress to join the Rare Disease Congressional Caucus. Click here to enter your information and automatically send an email to your Member. To view a full list of Caucus members, click here.
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Rare Disease Week on Capitol Hill 2024
Save the date for Rare Disease Week on Capitol Hill from February 25 to February 28, 2024, in Washington, D.C. This event brings together rare disease advocates from all across the country to amplify their voices to Members of Congress. Rare Disease Week includes a documentary screening, legislative conference, YARR meet up, Rare Disease Congressional Caucus briefing, Rare Artist reception, and meetings with Members of Congress. Registration will open on Wednesday, January 3.
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39th Annual Pacific Rim International Conference on Disability & Diversity - Beyond Access: Building a Culture of Belonging -
We all live to belong, to be part of something greater than ourselves. What can we do to help create such a culture of belonging, where each of us can fully contribute to the communities we are part of, while receiving the support and accommodations we need to flourish?
As we prepare to gather our global community of friends, scholars, practitioners, folks with disabilities, advocates, policymakers, public health and disability service providers, educators, parents, students and businesspeople, we invite you to lend your voices to this discussion at the 39th Annual Pacific Rim International Conference on Disability and Diversity as we gather again in person in beautiful Honolulu, Hawaii for the Premier International Gathering on Disability on Tuesday, February 27 and Wednesday, February 28, 2024.
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Rare Disease Day at NIH
Rare Disease Day takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH collaborations that address scientific challenges and advance research for new treatments. Be a part of Rare Disese day on Febuary 29, 2024!
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NAF Annual Ataxia Conference
May 30-June 1, 2024 - We invite you to be part of the largest Ataxia gathering in the world to learn, share, network, and have fun at this year’s Annual Ataxia Conference: Partnering for Progress!
Once again, AAC will be a hybrid event with sessions and events happening both in-person and virtually.
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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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