April 2021 eNewsletter
This eNewsletter contains news and information for anyone living with FOP and those who care for them. This includes family and friends, caretakers, physicians, researchers and IFOPA supporters.
Support the First-Ever Global FOP Awareness Day

Celebrate the 15th anniversary of the FOP gene discovery announcement on April 23, 2006, by taking part in our first-ever Global FOP Awareness Day activities.

Our 15th anniversary theme is “Uniting to Cure FOP." You can join with 11 FOP national organizations representing 15 countries in a variety of Awareness Day activities from framing your Facebook profile picture to sharing FOP facts and videos. Be sure to invite your family and friends to join you!

Generous friends of the IFOPA are also matching donations made in April up to $40,000 – our largest match in honor of Awareness Day yet! Please be a part of this worldwide event and make a special gift that will be DOUBLED and have twice the impact.

Shop for Good for Mother's Day April 24 & 25 at KendraScott.com and Raise Funds for
the IFOPA

Shop for Good Online at KendraScott.com on April 24 & 25. Use web code GIVEBACK-1AQR and 20% of your purchase will benefit the IFOPA.

  1. Shop for yourself
  2. Shop for Mother's Day gifts
  3. Share the code with friends & family

The more people that shop using the code GIVEBACK-1AQR, the more that will be donated to the IFOPA. There's lots to see in Kendra Scott's newest Spring Collection! The Shop for Good event is 100% online and 20% of all purchases are donated back to the IFOPA. 

FOP Video Up for a "People's Telly" Award - Vote by April 23

A video of three children with FOP - AJ, Eli & Sienna - telling their FOP stories during the 2020 In Pursuit of Cure Campaign is up for a "People's Telly" Award.

We need you to vote and to invite others to vote too! You can vote one time per Facebook, Twitter and email account.

The link to vote is at the end of the video.

IFOPA Taking Over RARE Revolution Magazine's Social Media on April 20

RARE Revolution Magazine is a digital magazine giving a voice to patients affected by rare conditions and the charities that represent and support them.

Today, April 20, the IFOPA will do a social media takeover of all of the Rare Revolution's social media channels sharing FOP facts and stories. Be sure to watch and share or retweet.


Thank you to Ipsen for serving as the editorial sponsor of the April edition featuring rare bone disease which will include several articles on FOP. The April edition will be released on April 30. You can subscribe to the digital magazine free of charge at rarerevolutionmagazine.com.
International Clinical Council on FOP Releases Updated Treatment Guidelines

The International Clinical Council on FOP and five consultants have recently released the 2021 FOP Treatment Guidelines. This edition contains many new sections that we hope you will find useful, as well as completely updated sections that you found useful in the past.
 
The Treatment Guidelines cover many topics; a good place to start is the Executive Summary of Key Practice Points (Section II). We also suggest you review the Table of Contents. You can click any topic in the Table of Contents to be taken to that section.

There are 4 new topics this year in Section V - Special Medical Considerations in FOP:
  • COVID-19 
  • Dermatology & FOP
  • Nutrition, calcium, and vitamin D guidelines 
  • Aids, assistive devices, and adaptations 

A general recommendation on page 5 of the Guidelines is that "Each patient should have a primary physician who is willing to consult with an FOP expert and help coordinate a local care team. We highly suggest that you share the 2021 Guidelines with your local primary physician and care team."

We are grateful to Drs. Kaplan and Pignolo, Corresponding Editors of the FOP Treatment Guidelines, and the other physicians and dentists from around the world who spent many hours reviewing published literature, discussing clinical practice and writing the 2021 Guidelines.

Meet the IFOPA's New Director of Research Development & Partnerships

We're pleased to announce that Danielle Kerkovich, PhD, joined the IFOPA team on April 1 as Director of Research Development and Partnerships.

Danielle joins the IFOPA after 10 years of serving as Principal Scientist for the Beyond Batten Disease Foundation. We're thrilled to have someone with Danielle's level of scientific expertise and experience working for a rare disease patient advocacy organization joining the IFOPA team. Please join us in welcoming her to the FOP community.

Nominations Now Open for the 2021 Jeannie Peeper Awards

Since 2010, the IFOPA has recognized individuals and groups who serve the FOP community through the Jeannie Peeper Awards named in honor of our Founder Jeannie Peeper.

Nominations are accepted from the community and are due on Friday, May 14. The Jeannie Peeper Awards Committee will review the applications and the 2021 Honorees will be announced in July.



Questions about making a nomination? Contact us at together@ifopa.org.
Get the Latest Educational Resources Offered by the IFOPA


  • The second quarter of our 2021 Advocacy Series brings with it a new topic! Listen to the latest podcast where we discuss Advocacy At All Ages in an interview with FOP mom Amanda Cali. Hear the parenting strategies Amanda used to empower her children, as well as the specific opportunities she gave her son with FOP during his childhood, teen and young adult years that encouraged his independence and helped him take ownership of his own advocacy. Listen now at ifopa.org/the_advocacy_series
2021 ACT for FOP Grant Program Call for Proposals

Since 2015, the International FOP Association (IFOPA) has awarded more than $1.2 million in grants through the ACT for FOP Grant Program to support research to accelerate the development of safe and transformative FOP.

We're pleased to issue this call for proposals for our 7th grant cycle; proposals are due no later than June 4, 2021.

April and May Community Connection Opportunities

  • Our Gratitude and Journaling Workshop for Adults is underway! We've had our first of six meetings with FOP community members from around the world participating. It's not too late to sign up to take part. Learn more and register at ifopa.org/journaling_workshops

  • The FOP Bereaved Families Group will meet on Thursday, April 22 at 7 pm EDT. This group is an opportunity for those who have lost a family member to FOP to support each other in loss and grief. To receive information on participating in the April meeting, please email Marilyn Hair at marhair1@frontier.com.

  • Community member Joey Suchanek is leading his third month of Saturday Game Day! Join Joey for an afternoon playing Pictionary! on May 15 at 2 pm EDT. You will be given an item to draw and people have to guess what it is. Oh, you can’t draw? Good! We can’t either! All you need is a device to Zoom with and you are good to go. Register here or email Joey at jsuchanek11@gmail.com if you have any questions.

  • In May, the IFOPA will hold an Online Community Crafting Event for those who love to channel their creative side! On May 22 at 12 EDT/1700 BST we'll be creating a variety of different paper butterfly art pieces! These projects are fun for adults and families and limited supplies is needed. Register today to receive a supply list and more details of the event!
You Don’t Have to Own a Pair of Bike Shorts to Help #cureFOP!

Whether you're an avid cyclist or just enjoy a nice bike ride, you can help cure FOP! The FOP community has been invited once again to participate in the Million Dollar Bike Ride and Team #cureFOP needs virtual cyclists who will help us fund a new FOP research grant.

This year’s ride is on June 12 and you can ride any distance, anywhere in your community...a local park, the beach, your driveway…you can even ride on a stationary bike!

The Penn Medicine Orphan Disease Center will match funds raised up to $30,000, but we need you help to make that happen. You can register to ride or register to ride and fundraise. Jump on your bike and help us #cureFOP!
 
Danni Lang Honors Her Sister, Heather Niles, as a Monthly Donor

National Siblings Day is in April and Danni Lang wants to honor her sister, Heather Niles, who had FOP.

She’s found monthly giving is the easiest way to contribute and hopes more people will join her. “I've seen the IFOPA really blossom the last few years,” Lang said. “My monthly gift is one way I can keep cheering the team on and supporting all the wonderful work they’re doing.”