2021 is coming to an end! The holiday season can keep you busy, so if you’ve missed any of the latest news we’ve shared through our social media, don’t worry! Get up to date with this edition of “In Case You Missed It!”
- UPCOMING HF EVENTS: Register for our virtual “Meet & Greet” and save the date for our in-person conference.
- WELCOME!: Michael Sparace joins HF Board of Directors.
- THANK YOU: Tony and Bertha Rye make matching gift to HF’s end-of-year fundraising campaign.
- ADVOCACY ALERT: Two opportunities to speak up for the Rare Disease Community!
- INTERESTING READ: HF supports telehealth expansion.
- SHARE YOUR STORY: HF highlights Personal Journey Stories.
Don’t worry if you’ve missed anything. We’ve got you covered!
UPCOMING HYPERSOMNIA FOUNDATION EVENTS
Register HERE for our virtual event “Meet & Greet: We’re in This Together.”
Is it a challenge for you (and your supporters) to manage life with a sleep disorder? You’re not alone! We invite people with IH, KLS, and narcolepsy AND their supporters to join us at an upcoming FREE virtual event on Saturday, January 15th at 1:00 p.m. (Eastern) to share their experiences, their paths to understanding these sleep disorders, and practical ideas for coping.
This 90-minute event will be led by community advocates Diana Kimmel from the Hypersomnia Alliance, Christen Wernig from the Colorado Narcolepsy & IH Support Group, and from the Hypersomnia Foundation, Michael Sparace and Diane Powell. The event will feature a special guest, Dr. John Harsh, a psychologist certified in sleep medicine.
Save the Dates for HF’s Conference in Charlotte, North Carolina
Join us in person in Charlotte, North Carolina on June 3 – 5, 2022 for a Hypersomnia Foundation conference for people with IH, narcolepsy & KLS, and their supporters. We are planning a great mix of speakers with “news you can use,” a Meet & Greet reception, discussion groups, and more!
The conference begins Friday, June 3rd at 5:00 p.m. and ends at noon on Sunday, June 5th. Add to your calendar now—more info on hotels, speakers and events is coming soon!
MICHAEL SPARACE JOINS HYPERSOMNIA FOUNDATION BOARD OF DIRECTORS
The Hypersomnia Foundation is proud to welcome Michael Sparace to our Board of Directors. “Michael has been a longtime volunteer and supporter of the Hypersomnia Foundation, and we are excited to have his talents and expertise on our Board,” said Diane Powell, HF Chair and CEO.
Michael has been volunteering for the Hypersomnia Foundation for several years, especially helping with technology during in-person and virtual conferences and webinars. He is passionate about HF’s work, as his wife has idiopathic hypersomnia. Michael holds a Bachelor of Arts in Philosophy from Clemson University and has a background in Product & Project Management.
TONY AND BERTHA RYE PROVIDE GENEROUS MATCHING DONATION
Bertha and Tony Rye are the generous funders of our annual end-of-year fundraiser, and this year have offered to match up to $15,000 in donations. Thank you, Mr. and Mrs. Rye!
For the Ryes, supporting the mission of the Hypersomnia Foundation is personal. Their daughter-in-law, Cat Page-Rye, was one of the three co-founders of the Hypersomnia Foundation, and served on the HF Board for many years. And their son, Dr. David Rye, is a pioneer in the field of IH research at Emory University! Through them, the Ryes understand the challenges facing people with IH and related sleep disorders.
You can help us meet the Rye’s matching challenge and raise $30,000 by December 31st. Your donation of any amount is greatly appreciated and supports our mission to improve the lives of people with idiopathic hypersomnia & related sleep disorders. Please consider making a donation today.
ADVOCACY ALERT! TWO OPPORTUNITIES TO SPEAK UP FOR THE RARE DISEASE COMMUNITY
Help Prevent Harmful Changes to the Orphan Drug Tax Credit From Becoming Law
The U.S. Senate is debating the Build Back Better Act that contains a provision that could harm rare disease patients and their ability to have access to new therapies and cures. Contact your senators and ask them to urge Senate leadership to take this harmful provision out of the Build Back Better Act so more rare disease patients can one day have access to an FDA-approved treatment. The Orphan Drug Tax Credit provides incentives for research and development of new treatments for the rare disease community by allowing drug manufacturers to claim a 25% tax credit for clinical testing expenses associated with rare disease drug development.
Unfortunately, while the current version of the Build Back Better Act includes several provisions that would make health care more affordable and accessible to many rare disease patients, it also would change the Orphan Drug Tax Credit to only allow drug manufacturers to claim this tax credit for a drug’s first rare disease indication and not any subsequent rare indications. Given that 90% of rare diseases lack an FDA-approved treatment, these changes could have a devastating impact on the millions of rare disease patients who continue to hope for a safe and effective therapeutic option to treat their specific condition.
Help Keep Paid Family and Medical Leave in the Build Back Better Act
The U.S. House of Representatives has passed the Build Back Better Act, and now it’s time for the Senate to act so this legislation can be signed into law! Contact your Representatives and let them know that the rare disease community is counting on them to include paid family and medical leave in the final version of the Build Back Better Act.
Patients with rare diseases and their caregivers need access to a robust paid family and medical leave program that allows them to balance their treatment and employment without facing financial catastrophe. Right now, more than 88 million Americans do not have access to this critical benefit. However, if passed as currently written, the Build Back Better Act would improve the quality of life and care for all patients by providing up to four weeks of paid leave to those who need time off work due to their own illness or to care for a loved one.
We are pleased to join multiple organizations standing with NORD, the ALS Association, and the Alliance for Connected Care, urging all U.S. state governors to maintain, and expand across state lines, access to telehealth services during the continued pandemic. Telehealth access has been critical for rare disease patients trying to manage their often-complex health conditions from the safety of their homes. Read the complete document HERE.
Many states used emergency authority to expand access to telehealth services, including changing their state licensure requirements to facilitate greater access to care by licensed medical professionals working in a different state than the patient. However, over the last few months, many states have allowed COVID-19 emergency declarations to expire, along with the licensure flexibilities, despite the ongoing pandemic and surge in cases due to the Delta variant. This has been extremely detrimental and disruptive to ongoing patient care. As a result, organizations are standing together, urging governors to maintain and expand licensure flexibilities for the duration of the federal public health emergency, reinstate licensure flexibilities if they have expired or implement new flexibilities to better address patient needs during the pandemic. This is critical to ensure patient access to necessary health care services and providers.
On Dec. 1, Harmony Biosciences announced that the U.S. Food and Drug Administration (FDA) has accepted an Investigational New Drug (IND) application for pitolisant for the treatment of idiopathic hypersomnia (IH). Harmony is planning to initiate a Phase 3 clinical trial to evaluate the safety and efficacy of pitolisant in adult patients with IH in the first half of 2022.
PERSONAL JOURNEY STORIES HIGHLIGHTED
Through the month of December, we highlighted some of the Personal Journey Stories that have been submitted to HF. Many people living with a sleep disorder share the same concerns and experiences and we want to let people know they are not alone.
Here are highlights from some of the stories we shared:
- The first problem was finding a doctor who understood my disorder. I went to a lot of doctors, but they all had to Google my symptoms and told me I was very “interesting.”
- Before I was diagnosed, I thought I was a lazy person. But I’m not. None of us is. But a lot of people don’t get that. I am not lazy. I just can’t help myself.
- None of us is alone. And I’m never going to give up. I’m always going to try to make people understand and to accept our disorder. That’s the most important thing for me.
- Our son plans to attend college sometime in the near future—we are working to find a way for him to have a chance to succeed. Even as we are trying to find a way for him to have successful treatment now, he looks forward to advances in treatment for IH, so that one day he can return to a more normal existence.
- Sometimes I’m sad and I don’t feel as if anyone is listening. I turn on my computer and go to the Hypersomnia Foundation website, and I know that I’m not alone. And that it’s not just in my head.