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Two Important Ways You Can Be Part of Rare Disease Day on Feb. 28

#1 Raise Awareness

Many of you have already been spreading awareness about FOP during the month of February — thank you! It’s easy to do and it’s not too late to participate. All you have to do is upload one of the FOP-branded Rare Disease Day photos to use as your Facebook profile photo.

You can choose from:
a. I Love Someone Rare (generic)
b. I Love Someone Rare (personalized with a photo)
c. I am 1 in 2 Million (personalized with a photo)

If you would like to have a photo added, send an email to nick@crookedguy.com. Please include a high res photo and let him know which photo frame you would like to use (“I’m 1 in 2 million” or “I love someone rare”). Nick will email it back to you ready to upload. A huge thanks to Nick Mahler for helping us personalize the campaign!

facebook rare disease

Instructions for changing your Facebook profile photo:

1. In Facebook, click on your Facebook profile picture. 
2. A new window will open and you will need to upload the image you have selected. Don’t forget that Nick Mahler can help you add your own photo (instructions above)
3. Resize the photo using the toggle circle at the bottom center of the upload window. Drag it to the left until the entire graphic fits within the crop space. Click here to see which button will help you resize the image.
4. Then hit save

Be sure to also use these hashtags with your Rare Disease Day posts: #CAREaboutRARE and #cureFOP. We can’t wait to see everyone’s Profile photos change. 

#2 Raise Funds for FOP 

Every single day counts in our critical work to find treatments and a cure for FOP. In fact, research is so important, the IFOPA invests more than 60% of our annual budget on it. A single day of the IFOPA’s commitment to funding research at the University of Pennsylvania’s Center for Research in FOP and Related Disorders costs $1,950. Please partner with the IFOPA to advance FOP research in honor of Rare Disease Day. Let’s support one — maybe even two — days of discovery at UPenn on Rare Disease Day in 2017. Please make a gift on February 28 to show that we’re all in this together, every day.

Once you have your Facebook page ready to go, invite your friends and family to help you support FOP research for treatments and, one day, a cure by sharing this link: https://donate.ifopa.org/rarediseaseday2017.

Encourage people to give whether they “Love Someone Rare” or they are “1 in 2 million.” We accomplish more when we work together!

 

Bingo for a Cure!

Chrissy Flexer Explains the History and Heart of Bingo for a Cure!

Bingo for a Cure

“After Joshua was diagnosed, I think it took almost a full year until we came to the reality of what FOP was when Joshua started to flare,” explains Joshua Scoble’s aunt, Chrissy Flexer.

“So many friends and family kept asking what they could do or how they could help. At the time, I ran Basket Bingos for my son’s PTA and I thought, why not try to do a cash bingo?

“With the support of our friends and family we jumped in with both feet and organized our 1st Annual Joshua's Bingo for A Cure!”

Since it began in 2008, the event has gained more and more attention.

“The last few years we have been selling out,” Chrissy explains. “We currently have seating for 1,550 people and we anticipate selling out early again this year!”

Organizing and hosting an event of this size is a “huge undertaking,” Chrissy says. It’s her full-time job from November until March each year and takes about 100 volunteers and many generous donors to pull off successfully.

But she hopes people aren’t intimidated by the scope and size of their particular fundraiser. Any fundraising effort makes a difference.

“I think the biggest tip is to just get involved,” she says. “Don't be afraid or intimidated to do a fundraiser. It doesn't have to be a large event—it could just be a bake sale at a school or sporting event. 

"It doesn't matter how much money you raise. Every penny is making a difference so why not try?”

Chrissy praises the involvement of their community and says it’s a key factor in what makes the event so successful.

“The support from our small community of Emmaus, PA, and the surrounding Lehigh Valley has been enormous,” she continues. “We get over 250 items donated every year from random people in the community along with our friends and families. 

“We could never pull off an event of this size without the continued support from everyone!”

The FOP community is also heavily involved, and Chrissy says that last year they had 10 FOPers and their families in attendance. FOP families also donate baskets and raffle items and sell tickets to their own families and friends.

No matter the size of your fundraiser, the most important thing is to say ‘thank you’ and let people know their generosity is making a difference. “We make sure to update them on clinical trials and we try to inform them where the money raised so far has been used,” Chrissy shares. “People in our community responded extremely well to the feeling they are making a difference in the FOP fight for a cure!”

She says they send a picture of Joshua with every donation receipt letter.

As for Joshua, the big event held in his honor gives him hope for the future.

“The Bingo makes me feel happy and excited,” he says. “I am glad they are getting closer to a cure so that one day I can do normal kid stuff.”

To purchase tickets or donate a basket or raffle item, please email cflexer20@aol.com or call (610) 349-8479.

To make a gift in honor of Joshua, click here

 

Erin Got Her Wish ... And Got Her Wheels!

Erin

“Getting my car back all modified so I'm able to drive it is a dream come true! I'm really excited and thankful for Make-A-Wish and Golden Boy Mobility for helping grant it!” Share Erin Danzer’s joy at getting behind the wheel. 

Read more:

San Diego Union-Tribune article

NBC San Diego article 

 

 

 

 

 

 

Contribute to the new IFOPA Pinterest Boards

The IFOPA is always seeking out creative and effective ways to connect the FOP community and share useful information with you. That’s why we’re going to develop an IFOPA Pinterest page full of helpful boards with helpful tips and suggestions provided by people with FOP, their families, physicians, clinicians and more.

You can help us get started by sending us your ideas today. Some potential ideas are:

Pinterest logo 3

  • Classroom resources for children, teens or college students
  • Dining modifications for those with limited jaw mobility
  • Travel tips
  • Recipes
  • Your top 5 most helpful adaptations
  • Tips and modifications for dressing and grooming

The possibilities are endless. If you think it’s useful, chances are there are plenty of other people who will also benefit from your idea! Please send your ideas to together@ifopa.org.

 

Regeneron Shares Updates on its Ongoing FOP Research Program

regeneron logo

We are pleased to share a few exciting updates on our ongoing work to help improve the lives of people with FOP. Regeneron has been investigating FOP for two decades and is currently focused on studying REGN2477, a potentially promising investigational treatment for FOP that was granted orphan drug designation status from the U.S. Food and Drug Administration and the European Medicines Agency. REGN2477 is a human monoclonal antibody that blocks Activin A, a protein discovered by our scientists to be a key factor in the development of heterotopic ossification in a mouse model of FOP.

Earlier this year, we completed our first-in-human study to evaluate the safety and tolerability of REGN2477 across a wide range of doses. We convened our first Patient Advisory Board meeting with 12 members of the FOP community to gain important first-hand insights on the unique challenges faced by individuals living with FOP. The discussion helped us better understand the multi-faceted needs of the FOP population, and we are incorporating these learnings into the design of the Phase 2 study in patients planned for this year.

Regeneron is a leading U.S. biotechnology company that has been run by physician-scientists for nearly 30 years. We are dedicated to developing life-changing medicines for patients with serious medical conditions. We have thus far developed four approved treatments; all through original Regeneron research. Some of these medicines are for patients with relatively common conditions such as certain blindness-causing diseases. Others are for patients with less common genetic conditions, such as heterozygous familial hypercholesterolemia or Cryopyrin-Associated Periodic Syndromes (CAPS), a set of rare, yet closely related, auto-inflammatory diseases. In addition to FOP, we currently have investigational medicines in development for rheumatoid arthritis, asthma, atopic dermatitis, cancer and Ebola. Please stay tuned for updates on our progress and visit www.regeneron.com to learn more.

 

IFOPA Welcomes New Board Members

Gail Weakland

We’re thrilled to introduce three new members of the IFOPA Board. You can look forward to interviews with our new and current board throughout the year in your monthly issue of the FOP Connection.

For now, please help us extend a warm welcome to:

Andrew Davis

David Rocke

Danielle Fraser

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And we hope you’ll join us in giving our thanks for 13 years of board service to our outgoing board members, Moira Liljesthröm and Gail Weakland. Moira served as Chair of the Research Committee and on the International President’s Council Steering Committee. Gail served as Treasurer and Chair of the Finance Committee.