Why We Advocate: The Importance of Access to Efficient, High-Quality Healthcare
Anyone living with a rare disease wants access to care — not just substandard healthcare, but healthcare that will keep them alive and healthy. Sadly, this is often not the case for so many patients.
I am Laura Bonnell, the mother of two daughters with cystic fibrosis. For 30 years, I have advocated for my daughters to ensure they get the care they deserve, and to promote legislation that will assure their basic rights to care.
In Michigan, the RDAC
Representative Jason Morgan reintroduced the Rare Disease Advisory Council (RDAC). See the press release: Morgan Reintroducing Bill Creating Rare Disease Advisory Council – housedems.com
February 24-26th: Everylife Foundation Rare Disease Week on the Hill
Hundreds of advocates (caregivers and patients) gathered in Washington, D.C. to make their voices heard regarding Federal legislation. Our message: support bills that impact the rare disease community. Laura is pictured here with Siri Vaeth who is the Executive Director of CFRI in California. Siri’s daughter has CF.
- Continue to support Federal Biomedical Research funding and public health support (FDA, CDC and NIH).
- Reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program at FDA.
- Including Accelerating Kids’ Access to Care Act (AKACA) in the first available legislative package.
- Ask members of congress to join the Rare Disease Congressional Caucus
For more information on these federal issues: https://everylifefoundation.org/rare-advocates/
Pictured: Siri and Laura on the Hill and Everylife group
February was a busy month for the rare disease community
February was a busy month for the rare disease community (a disease/disorder community is considered rare if there are fewer than 200,000 people).
Bonnell Foundation CEO, Laura Bonnell was the keynote speaker at the 2025 Rare Disease Day Gathering: bridging the gaps. Laura shared her CF journey as the mother of Molly and Emily, and as an advocate for the rare and CF community. This is always a fulfilling conference to attend with so many representatives from the rare community, including incredible caregivers and scientists.
Pictured: Dr. Caleb Bupp and Laura Bonnell
Morgan Reintroducing Bill Creating Rare Disease Advisory Council
LANSING, Mich., Feb. 27, 2025 — State Rep. Jason Morgan (D-Ann Arbor) will reintroduce legislation to create the Michigan Rare Disease Advisory Council (RDAC) in honor of Rare Disease Day tomorrow. The purpose of the council is to create a publicly available list of rare diseases and identify the best ways to enhance educational resources, care, treatment and support for those living with rare diseases, their loved ones and their health care providers.
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Rare Disease Advisory Council
The newly constituted Michigan Rare Disease Advisory Council (MI RDAC) met in early October 2024 and began its mandate as an advisory body that provides Michigan’s rare disease community with a stronger voice in state government.
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Time to pass HB 4167: The Bonnell Foundations Laura Bonnell talks with Greg Bowman on WWJ.
Future of Medicine is in the Hands of the Next Generation of Medical Students
“The future of medicine is in the hands of the next generation of medical students I have come to know. They are bright stars, and I am confident in their medical careers” says Laura Bonnell, the CEO of the BonnellFoundation: Living with cystic fibrosis. “I was honored to meet Atef Choudhury and Naim Mashni when they volunteered to raise awareness about The BonnellFoundation. The co-founders of Cure Found, a student organization that originally started at MSU, asked me to speak about our Foundation to approximately 50 of their pre-medical/pre-health undergraduate students who are committed to CF and Cure Found. Atef and Naim are organized, smart and doing wonderful work for the CF community and pre-medical/pre-health students.” Thanks to their mentor at MSU, Dr. Ryan Thomas for the introduction (he’s also on The Bonnell Foundation Advisory Board).
Chronically Ill in a War Zone
by ROBIN SCHWARTZ
An Israeli mother of three shares how she’s coping with cystic fibrosis amid the war.
Doctors in Egypt. Music video. Great work
Stepping back in time, that’s what it feels like to see what these Egyptian doctors have to work with in regard to medications. They have 4 vests for all 600 individuals with CF. In the U.S. usually each person with CF has a vest in their home. There are no CF modulators here (no Trikafta), it’s a dream for them right now. But these doctors are incredible, working to save the lives of these young children with this viscious disease. They don’t have the basics like vitamins, most of the patients suffer from malnutrition. When you watch the video you can see the transcript below if you need it. I love all these incredible people. They are hero’s. They are CF warriors. They are my people. xo
Dr. Sally Raafat Ishak “In Egypt now things are a little bit better than they were before, the creon is now on the label by the Ministry of Health, but the amount is still not sufficient to cover the needs of each patient daily. The hypertonic saline is now available, but we have the 7 percent instead of three percent, which is now available in the market. We still give the patient, the drug, but no added vitamins are still not available. And definitely the modulators are still far away from Egypt. We hope that they will be available in the near future to all of our patients.” Dr. Osama Taha Amir, Professor of pediatric pulmonology Zaga Zig University “ Our patient life expectancy is very short, young age. What, looking at the patient in Europe and America that live, almost normal life, they get to forty, they are very healthy. We hope that our children get this chance. We need them to get the modulator, we need them to get pulmozyme, to get every medication available to them. We need them to get the vest for every patient, not one vest for all our patients, no, we need vests for every patient. To get the best life. To live normal life.” Dr. Dina Tawfeek Sarhan, Assistant professor of pediatric pulmonology, Zaga Zig University, “The vest you donated will help our patients a lot. We are excited to start to use it on one patient and send you a video. I think we will be delight and our patients and you also. As the nutrition part, we don’t know what to do, we have the basics. Laura Bonnell asks: “From the United States to here, you’re at such a different stage, right? Dr. Mahitab Morsy Hussein, “Yes, yes, we are way behind. We are looking for to serving our patients in a better way. We are starting here our center of Excellence. The sweat machine is here. One year ago, we have used it. We have diagnosed a lot of patients, and we are aiming for more care, more better care. I know this is way behind, like in the U.S. But we are aiming better for our patients, and they deserve it.
