In our March episode of the IFOPA Podcast Series, IFOPA Community Fundraising Manager Cathryn Roys chats with FOP mom Tiffanie Williams about how she first learned about the IFOPA, what motivates her work to fundraise and raise awareness about FOP and how her special fundraiser, Bee-lieve in a Cure, came to life. Get the buzz on this sweet fundraiser and hear tips on how you can start fundraising for research and family education and support programs.
To learn more, visit bee-lieveinacure.com.
Brianna Tanner published Don't Miss the Quarter One Advocacy Series Webinar in Calendar of Events 2021-03-03 12:30:36 -0500Over the past two months, the IFOPA's Advocacy Series has focused on laying the foundation of the program which will equip you to successfully advocate for your needs in any setting. Quarter one resources have included the Advocacy: You Can Make a Difference podcast, worksheet and community panel.
Check out the resources from January and February >
This month, we'll hear from Patient Advocacy and Engagement Consultant Lisa Schill in a webinar on March 22 at 3:00 pm EST / 20:00 GMT.
Register for the March 22 webinar >WHENMarch 22, 2021 at 6pm
Brianna Tanner published FOP Bereaved Families Virtual Meetup on March 25 in Calendar of Events 2021-03-03 12:26:39 -0500FOP Bereaved Families is a private support group, managed by FOP community members Marilyn Hair and Nancy Sando, for family members and close friends of loved ones with FOP who have passed away.
This group is an opportunity for those who have lost a family member to FOP to support each other in loss and grief.
The group will meet Thursday, March 25 at 7 pm EDT/6 pm CDT/5 pm MDT/4 pm PDT.
To receive information on participating in the March meeting, please email Marilyn Hair at [email protected].WHENMarch 25, 2021 at 7pm
Brianna Tanner published 2021 Virtual FOP Family Gathering Call for Speakers in IFOPA News 2021-03-01 09:28:08 -0500
Brianna Tanner published Ipsen Launches The World's Rarest Dictionary with a Word from the FOP Community in FOP News 2021-02-25 14:05:51 -0500
Join the Conversation
Tune in each month to hear thoughtful, helpful conversations from the FOP community. We’re talking about advocacy and awareness—sharing insights on research, clinical trials and more.
We’re talking about the issues that matter most to you.
Do you have a topic you would like considered for a future episode? Please let us know!
Brianna Tanner published Creating a Story with Impact in IFOPA Podcast Series 2021-02-22 15:00:45 -0500In our February episode of the IFOPA podcast series, IFOPA Family Services Manager Hope Newport interviews Shannon von Felden, EveryLife Foundation and Katie Burns, SmithSolve to discuss why it's important to share your rare disease experience, strategies and proactive steps you can take to prepare your story and opportunities to practice and share your story through Fast Forward for RARE and Rare Across America.
FOP community members residing in the United States can participate in the following programs:
In Honor of Joey Hollywood
Joe was a late in life blessing for my husband and me. We were beyond thrilled. We were a couple becoming a family. It was like getting a do-over to enjoy all of those cool things from your childhood but now sharing them with a mini-version of yourself.
On June 6, 2007, this beautiful child with soulful blue eyes arrived – Joseph Francis Hollywood Jr. – and he was perfect. I didn’t notice he had these quirky little toes until we brought him home and took off his socks. He also had a small lump on his spine that eventually went away. Of course, we were concerned. The doctors told us it was unusual but not to worry. We were relieved and went on with our lives.
Joe’s toddler years were normal – he was a big, healthy and happy boy. We did the typical activities like kiddie soccer and the little gym. He hit milestones but some were at the latter end. He never crawled but rolled (the doctor said he’s getting where he wants to go so don’t worry) and he didn’t walk until 17 ½ months. Throughout this time, Joe always had bumps on his head – sometimes it seemed they appeared out of nowhere. When he was 3 yrs old he had a facial flare – it was frightening for us – he was unrecognizable. The ER doctor told us it was a hematoma draining from a bad bump on his head and it would go away. It went away after a week and once again we were relieved and went on with our lives.
In August 2011, we were in the hospital and I knew in my heart that the swelling in his neck and shoulder was something big. When the doctor came to his room to tell me they were pretty sure he had FOP, I asked “Can it be treated? Can it be cured?” They said no and no. They told me not to Google it and to contact Dr. Kaplan. Of course I googled it and I was devastated.
Tuesday, September 14, 2011 we met Dr. Kaplan who confirmed our sweet boy had FOP. Dr. Kaplan managed to put us somewhat at ease and gave us what we desperately needed: HOPE. He told us he believed that in Joe’s childhood there would be clinical trials for drugs to slow progression and possibly cure FOP. It was our jobs to keep him safe – no easy task!
Joe isn’t defined by FOP. We focus on what he can do and help him explore his interests and talents. Our biggest focus has been providing a normal childhood – FOP is only in the forefront when it needs to be.
If you’ve had the pleasure meeting our son then you know his smile lights up the room. Joe is warm, kind, has an infectious laugh and a great sense of humor. He is an old soul who is loyal and loves his family, his friends and his dog Jinx. He is a technology wiz, video game enthusiast, loves to swim, has been a scout, is in the 4H, plays the piano and cello and has sung in the chorus. He is also an A student who enjoys school and all the activities it offers.
As a family we are fierce team. FOP has given us an appreciation for life and we don’t take anything for granted. We try to enjoy each day, each moment, always trying to make the best memories.
We are involved in the FOP community. We help fundraise and raise awareness. When there is a newly diagnosed family, we embrace them. The FOP community has become family to us. The amazing friendships and support systems we have are incredible.
I often tell people Joe is going to make a difference and change the world. When you support the IFOPA, you will be a part of that, and for that I can never thank you enough.
What is FOP?
Fibrodysplasia Ossificans Progressiva is one of the rarest, most disabling genetic conditions known to medicine, it causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another. FOP is Genetic disease affecting 1 in 2 million people. There does not appear to be any ethnic, racial, or gender patterns. There are only around 900 people worldwide who have been diagnosed with FOP.
If you have questions about making a gift, please contact Cathryn Roys, IFOPA Community Fundraising Manager, via +1 843-709-3244 or email.
There are several new ways for you to participate virtually this yearRead more
Brianna Tanner published Global Genes RARE Patient Advocacy Summit in Calendar of Events 2021-02-03 10:12:16 -0500
This is not an IFOPA-sponsored event. Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. More information at https://globalgenes.org/event/patient-summit/.WHENSeptember 28, 2021 at 6pm - September 29, 2021 at 6pm
Brianna Tanner published EveryLife Foundation Rare Disease Week in Calendar of Events 2021-01-25 16:44:02 -0500
Brianna Tanner published Rare on the Road Leadership Tour In-Person Training and Networking in Calendar of Events 2021-01-25 16:29:30 -0500
This is not an IFOPA-sponsored event. This event is part of the Global Genes and EveryLife Foundation Rare on the Road Leadership Tour. Rare on the Road events are held around the country and are designed to develop the next generation of advocacy leaders. More information at https://raretour.org/WHENMay 22, 2021 at 12pm
Brianna Tanner published Rare on the Road Leadership Tour In-Person Training and Networking in Calendar of Events 2021-01-25 16:25:02 -0500
This is not an IFOPA-sponsored event. This event is part of the Global Genes and EveryLife Foundation Rare on the Road Leadership Tour. Rare on the Road events are held around the country and are designed to develop the next generation of advocacy leaders. More information at https://raretour.org/WHENMay 15, 2021 at 12pm
Brianna Tanner published Rare on the Road Leadership Tour In-Person Training and Networking in Calendar of Events 2021-01-25 16:21:20 -0500
Las Vegas, NV
This is not an IFOPA-sponsored event. This event is part of the Global Genes and EveryLife Foundation Rare on the Road Leadership Tour. Rare on the Road events are held around the country and are designed to develop the next generation of advocacy leaders. More information at https://raretour.org/WHENMay 01, 2021 at 12pm
Brianna Tanner published A Rare Disease Leadership Interactive Webinar in Calendar of Events 2021-01-25 16:15:56 -0500
This is not an IFOPA-sponsored event. This event is part of the Global Genes and EveryLife Foundation Rare on the Road Leadership Tour. Rare on the Road events are held around the country and are designed to develop the next generation of advocacy leaders. More information at https://raretour.org/WHENMarch 23, 2021 at 11am
Brianna Tanner published National Organization of Rare Disorders (NORD) Patient and Family Forum Living Rare, Living Stronger Interactive Virtual Forum in Calendar of Events 2021-01-25 14:01:37 -0500
National Organization of Rare Disorders (NORD) Patient and Family Forum Living Rare, Living Stronger Interactive Virtual Forum
This is not an IFOPA-sponsored event. More information at https://rarediseases.org/living-rare-forumLiving Rare, Living Stronger is an annual patient-focused conference, providing patients and families with practical tools for living their best lives with rare diseases. We will hear from patients, caregivers, and advocates, as well as the medical community and how everyone works together for the benefit of the rare disease community.WHENJune 26, 2021 at 12pm - June 27, 2021 at 12pm