Sometimes we have to give up control and show our vulnerabilities in hopes that a greater good will come of it. Earlier this year, the Adam family gave videographers access to their day-to-day lives for a Discovery/TLC channel documentary. This video is a small segment of the episode that is set to air in 48 countries across the world. Our wish is that the entire documentary captures the immense hope we have for a cure and the love these boys share and bring to everyone whose lives they touch.
More than 100 Jansen’s Warriors donned their capes to “Hero Up for Jansen’s” at the Jansen’s Foundation’s first-ever walkathon on Saturday, July 29, 2017, at Zorinsky Lake Park. The walkathon, which helped raise funds for a cure and
There are only five people in America diagnosed with Jansen’s and they came together for the first time for this inspiring event. Michel Straley, 22, the only other adult living in the U.S. with Jansen’s, traveled to Omaha from St. Louis with her fiancé, Andrew Hardy.
Eleven-year-old Levi flew to Nebraska all the way from Mississippi and spent the week with his buddies, Arshaan and Jahan.
The walk featured a super-hero photo booth by Emerald Mae Photography, and participants were surprised with a visit from Batman and Robin!
The Nebraska Marathon was amongst the many groups and businesses that supported “Hero Up for Jansen’s.”
It was a wonderful event with the community emerging as the true hero of the hour!
A precious moment, indeed.
To visit the "HeroUp" Picture Gallery, click here
On April 19th – 21st, The Jansen’s Foundation attended the World Orphan Drug Congress at Washington DC. The conference brought together more than 150 elite speakers to educate and inspire over a 1,000 attendees from pharma, biotech, patient groups, academics and government bodies.
The conference was a good opportunity for The Jansen’s Foundation to establish important connections with the worlds of scientific innovation and commercialization. In no other drug development arena has the patient become so influential. We see this in our own journey as we work to collaborate with scientists and drive orphan drug development. Government, Payers and Industry alike are seeking collaborations with patients to improve clinical trials, drug development and access, and this event was one not to be missed.
I was honored to meet one of the great legends in the field of rare diseases. As director of NCATS, Dr. Stephen Groft has helped give thousands of rare disease patients and their families renewed hope and a collective voice. A public servant for more than four decades and a tireless advocate for rare diseases research, Dr. Groft is a luminary and true champion of rare diseases research!
I also had the pleasure of meeting Dr. William Gahl, the Clinical Director for NIH Undiagnosed Diseases Program. The wisdom, compassion, and drive could easily be witnessed in discussion with Dr. Gahl. What an exciting day just to get to share our story with him and see his interest in Jansen’s!
Sharing the Jansen’s Foundation’s story has been our way of putting an ultra-rare disease into the Rare Disease Spotlight. We made several important connections during these three days, connections sure to bear fruit in the days to come.
Meeting John Crowley, CEO of Amicus, and hearing how he is "impressed with your efforts", was the icing on the cake of a really productive conference.
On March 23rd, The Jansen’s Foundation had the honor and sheer pleasure of meeting the wonderful Endocrine team at Boston Massachusetts General Hospital.
The team has been researching Jansen’s Disease for about 20 years, but never met a patient with the condition. So it was a pivotal moment for both patient and team; it makes research and its results more relevant to patients.
Walking through the lab was surreal. To witness first-hand the passion, drive and genius it takes to work on a cure for Jansen’s left me with a resounding sense of hope for the future. In the last couple of years, the team has not only successfully modeled a Jansen’s PTH receptor, but also is close to unlocking some of its mysteries.
It is important to understand the best ways for patients and researchers to work together. Patients who are included as active partners in research can provide useful input on what it is like to live with a rare disease. The levels of pain, the constant surgery and care, were all relevant to the cause they are working on.
As patient partners and researchers for Jansen’s disease, we share our experience to develop a patient-centered project. We can and will continue to use our experience to share how the patient voice can affect the execution of research and to provide a model for meaningful collaboration.
On March 23rd, the Jansen’s Foundation was invited to an executive-level reception hosted by BiotechTuesday and Mass Innovation Labs with the Center for Rare Neurological Diseases at the Massachusetts General Hospital. This was their first Annual Industry-Academia Convocation on Rare Disease and a unique opportunity to foster dialogue between research and the biotech industry to advance therapies for rare diseases.
TJF also had the exciting experience of meeting with Levi Gershkowitz, a photographer and writer, who creates compelling patient ethnography for education, advocacy and marketing—with a focus on rare diseases.
Living in the Light, founded in 2012 by Levi, began as an advocacy initiative utilizing the potency of photography and compelling personal narratives to educate about the realities of life faced by those with rare diseases. Since then, it has evolved to meet the complex needs of the rare disease community to ensure that its members are truly seen and heard as people, not patients.
We also had the privilege to meet Nadia Bodkin! Nadia is a seasoned rare disease advocate, born with 3 debilitating rare diseases complicated by several associated conditions. Of course that didn’t stop her! She served as the chairperson for Rare NJ, a rare disease advocacy coalition and was the Executive Director for the Rare Disease United Foundation. She also founded and has been directing EDSers United, a rare disease patient advocacy organization focused on Ehlers-Danlos Syndrome.
We know our meeting with Levi and Nadia is the start of a beautiful friendship; we share a common theme: we are determined to make a difference in the lives of those affected by rare conditions.
For the tenth consecutive year, patients and advocates will run as members of the Running for Rare Marathon Team in support of the National Organization for Rare Disorders (NORD). NORD is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them through programs of education, advocacy, research and financial assistance services. Rare diseases impact the lives of 30 million Americans – two-thirds of whom are children. On average, it can take a patient 5-7 years to receive an accurate diagnosis, at which time 95% will be told there is no FDA approved treatment or ongoing research to learn more about their disease. The funds raised from the Running for Rare Team will support NORD’s Undiagnosed Diseases Program; helping individuals to receive a diagnosis from the National Institutes of Health (NIH).