April 2018 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.
Double Your Gift on FOP Awareness Day 

 Make your gift in support of FOP research go twice as far. When you give during the month of April, every dollar you give will be matched for double the impact!

Nominations for 2018 Jeannie Peeper Awards Now Being Accepted

Since 2010, the IFOPA has recognized individuals and groups who serve the FOP community through the Jeannie Peeper Awards.

Through Monday, May 7, you have the opportunity to make nominations which will be reviewed by the Jeannie Peeper Awards Committee.

Award categories include: 
  • Outstanding Community Involvement Award (Individual or Group)
  • Emerging Leader Award
  • Outstanding International Leadership Award (Individual or Group)

See a list of past winners . Of note, the President's Lifetime Leadership Award is selected by Jeannie Peeper. 

SAVE THE DATE for the 2018 FOP Family Gathering

We’ll be in Baltimore on November 16-18, 2018 . Save the date and watch your inbox for an upcoming survey.

FOP Family’s Philanthropy Ripples Through Community

Find out how the Casebolt family’s philanthropy has inspired others to fundraise for FOP.

We Want to Hear from You—Family Services Survey

It's not too late to complete the  FOP Family Services Survey .
 
The feedback of teens and adults living with FOP, along with parents, spouses/partners and other caregivers is very valuable and will help us shape the programs and services we provide to FOP families. 
 
The survey is open until  Monday, April 16, 2018 at 11:59 PM Pacific Time (GMT-8). Take the survey >
 
Thank you for sharing your views and thoughts.
ABLE Accounts Webinar

Find out if an ABLE Account (a tax-advantaged savings account) is right for you at the IFOPA’s webinar on April 25 at Noon ET . Chris Rodriguez of the National Disability Institute and Patrick Doerr, an FOP community member who recently set up an ABLE account, will be our panelists.

Two Upcoming Webinars on Clinical Trials

Two new clinical trials are recruiting patients. In May we’re offering two webinars to provide you more information.

Be Part of the Million Dollar Bike Ride

The Million Dollar Bike Ride is only a month away! The May 20, 2018 bike ride through the streets of Philadelphia helps the IFOPA raise money for a brand new FOP research grant. Learn more about biking >
 
You can help fund more FOP research by biking, donating and spreading the word. Donate and spread the word !
Boston Band Playing to #cureFOP

The band Semi Good Lookin' will represent Blueprint Medicines at the 2018 Battle of the Biotech Bands (BoBB) on the evening of May 9 in Boston, Massachusetts.

Last year the band competed on behalf of the National Organization of Rare Disorders (NORD) and this year they are competing to benefit the IFOPA.

Order Your FOP Lapel Pin Today

FOP lapel pins are now available in the online store . They’re a great way to help spread FOP Awareness and start conversations about FOP. Why not buy several to share with family and friends—and make the most of shipping costs, too!
 
FOP Registry Now Available in Russian

The FOP Registry is a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. Participating benefits all people living with FOP, clinicians, physician researchers and the biopharmaceutical industry working on drug treatments for FOP.
 
More languages are being added so we’re able to make the Registry as inclusive as possible. Russian is the newest language in which the Registry is available.
 
Don't forget that when you complete your enrollment survey or a 6-month follow-up survey through July 31, 2018, you are entered to win an iPad or iPhone!