Victoria Mandracken

  • published Programs & Services in PATIENTS & FAMILIES 2015-10-12 16:49:47 -0400

    Programs & Services

    Making an impact through research, education, support and advocacy

    The IFOPA provides many programs and services to patients, families and the FOP community.

    Research

    • More than $500,000 is given to the Center for Research in FOP and Related Disorders at the University of Pennsylvania School of Medicine each year.
    • Instrumental scientific research studies are administered on FOP patients facing additional afflictions.
    • The FOP Registry is a global, voluntary database that collects and reports demographics, disease and quality-of-life information directly from individuals with FOP twice a year via a secure, web-based tool.
    • The Competitive Research Grant Program provides, through a competitive application process, research funding to scientists conducting research on Fibrodysplasia ossificans progressiva (FOP).
    • The Tooth Ferry Program at UPenn collects baby teeth as children lose them to study as a model for how FOP functions at a cellular level. Children with FOP, as well as siblings and non-family members, are welcome to participate.  

    Education

    • Education is provided to the medical community on early signs of FOP.
    • Various publications and other media about FOP, clinical trials and issues surrounding those diagnosed with FOP are distributed via the IFOPA website.
    • A collection of videos highlighting various aspects of FOP are available on the IFOPA website, as well as the IFOPA YouTube channel.
    • The IFOPA hosts regional events, such as the Midwest Family Gathering, to bring together families with FOP and clinicians in the field for a weekend of learning and networking.  

    Support

    • The FOP Connection is a monthly eNewsletter featuring articles and photos about FOP research, resources, fundraising, and the FOP community.
    • Online Support Groups allow individuals living with FOP and/ or their parents to connect with one another in a safe environment. These groups are used to ask questions and get advice, share concerns, provide practical suggestions for everyday life and situations that may arise, and simply be connected to others with FOP. These groups are generally administered by FOP individuals or, in the case of Parents with FOPers, by a parent of a child with FOP.
    • Quality of L.I.F.E. (Living Independently with Full Equality) Awards are granted to patients with FOP. The program is designed to promote health, welfare and independence. Examples of awards range from adaptive equipment, walkers, wheelchairs, adaptive bed, vehicle adaptation, tuition/registration for vocational training, specialized bicycles, computer hardware or assistive technology and reading aids. Click L.I.F.E. Award for guidelines and application.
    • The Mentoring Program is designed to provide constituents in the FOP community the opportunity to have mentors to better guide them through the challenges of FOP.
    • Periodic symposia, gatherings and meetings bring together FOP patients with health professionals who specialize in FOP research and care. These gatherings provide a wonderful opportunity for FOP patients to gather in a collaborative forum to discuss FOP research, exchange information and experiences, share coping strategies, and much more.
    • Medical binders are available to help patients with FOP keep track of their health. FOP individuals can receive this by emailing together@ifopa.org.
    • Guidebooks written for families dealing with FOP are available online.

    Advocacy

    The IFOPA is an active member of:

    Learn how you can become an IFOPA Advocate


  • published 25th Anniversary in History of IFOPA 2015-10-09 17:03:53 -0400

    25th Anniversary

    IFOPA Celebrates its 25th Anniversary in High Style!

    By Mark Gambaiana

    To commemorate the wonderful growth, multiple achievements and progress toward a treatment and cure, the IFOPA celebrated its 25th anniversary with a family gathering at the Gaylord Palms Resort and Conference Center in Kissimmee, Florida from November 7-9, 2013. Please view our 25th Anniversary Highlight Video.


    More than 279 people enjoyed the three-day festivities, including 59 FOP members. Attendees represented a dozen international countries and six continents.


    The 2013 year marked a special milestone in the history of the IFOPA — our 25th year of operation! Founded by Jeannie Peeper as a means to end the isolation of those afflicted with FOP, our organization began in 1988 as a pen pal group. Now, we are the world’s leading advocate and resource on FOP whose programs and services are focused on research, education, support and advocacy.


    An opening reception, series of family-oriented activities, research updates, clinical appointments, special presentations on dental and anesthesia workshops and a celebration banquet all highlighted the weekend. The banquet included remarks by Richard Simcox, one of the world’s leading FOP philanthropists, Dr. Fred Kaplan, the renowned leading FOP clinician, a special presentation by Saskia Blonk of The Netherlands to the FOP researchers, and a tribute to our founder and president, Jeannie Peeper.


    The anniversary year was a time to reflect and say thank you to the many families and friends who have made investments of items and resources to advance our cause. Because of you, we have funded research and provided programmatic support to improve the lives of people around the globe who suffer from this condition.

    Doctors and FOP Members
    Thank you to our scientists and researchers who are working daily to solve the mysteries of FOP and keep the march moving forward toward a treatment and a cure.


  • published 11 Founding Members in History of IFOPA 2015-10-08 12:24:15 -0400

    11 Founding Members

    Below are articles about each IFOPA Founding Legacy Member written in 2013.

    Monica Anderson, Maryland, United States

    Sarah Cameron,* England

    Louis (Lou) Cantwell, Nova Scotia, Canada

    Sharon Fitts, North Carolina, United States

    Margaret Jean Jones,* Alabama, United States

    Spencer Man,* Oklahoma, United States

    Jeannie Peeper, Florida, United States

    Nancy Sando, Michigan, United States

    Jack Sholund, Minnesota, United States

    Sharon Van Slyke,* Texas, United States

    Shay Williams, California, United States

    *Deceased

     


  • published Jeannie Peeper Awards in ABOUT IFOPA 2017-07-19 09:40:46 -0400

    Jeannie Peeper Awards

    Celebrating achievement in the FOP community

    The Jeannie Peeper Awards recognize those who make exceptional contributions to the worldwide FOP community through their leadership, service, fundraising, awareness-building and other accomplishments. These awards honor Jeannie Peeper for her initiative, leadership, vision and courage as Founder of the International FOP Association. 

    We are pleased to announce the 2017 Honorees.

    Jeannie_Peeper_Award_Winners_2017.jpg

     

     

     

     

    Pictured above from left to right
    President's Lifetime Leadership Award: Moira Liljesthröm
    Outstanding Community Involvement Award Individual: Amanda Pullano
    Outstanding Community Involvement Award Individual: Kim Weston
    Outstanding Community Involvement Award Group: The Lawler Family
    Outstanding International Leadership Award: Julie Collins
    Inspiring Leadership Award: Jasmin Floyd

    Please click on the links below to read about each year's award recipients.

     

     

     


  • published Videos in WHAT IS FOP? 2015-10-02 14:18:25 -0400

    Videos

    The YouTube channel FOPNews is where we publish all IFOPA and FOP videos. Please visit FOPNews to view all videos.

    Change My Life: A Thank You Video

    FOP Facts and Insights

    This 15-part video series offers an abundance of information and advice for people with FOP and their family members, physicians and caregivers. Produced in 2009, the videos include information by Frederick Kaplan, M.D. and Dr. Eileen Shore, Ph.D. of the University of Pennsylvania School of Medicine, as well as IFOPA community member Lori Henrotay, who helped produce the videos for the organization.

    1. Series Overview
    2. What is FOP?
    3. Clinical Features
    4. FOP Misdiagnosis: Issues and Consequences
    5. Treatment Guidelines and Considerations
    6. Pain Management
    7. Special Medical Considerations
    8. FOP Gene Discovery
    9. The FOP Research Lab
    10. Collaborative Research
    11. Pregnancy
    12. Anesthesia
    13. Hearing Impairment
    14. Piercings
    15. Preventative Oral Hygiene

    Workshop Videos

    These are two videos from workshops presented for FOP individuals and families at the IFOPA 25th Anniversary event in 2013. 

    1. Oral Health Workshop
    2. Anesthesia Workshop

  • published Recent Diagnosis in Living with FOP 2015-09-24 16:21:41 -0400

    Recent Diagnosis

    Waiting on copy for this page. 

    Waiting to see if we have photos of Dr. and kids in a clinical setting. Have photos of Dr. Kaplan with kids (less clinical) - waiting on permission to use. 


  • published Mentoring Program in Programs & Services 2015-09-24 16:08:32 -0400

    Mentoring Program

    When individuals and families affected by FOP contact the IFOPA, they often want to speak to another family dealing with FOP. To facilitate this process, the IFOPA has created a Mentoring Program, which is designed to provide a family-to-family connection in addition to staff support. Volunteer representatives in the Mentoring Program will be called Mentors; they will either be affected by FOP or be the parent/sibling/caregiver of a person with FOP.

    Mentors in this program will serve families in the following ways:

    • Listen and share their own experiences with FOP
    • Provide a route of communication for families in their region
    • Be familiar with IFOPA programs and provide useful information and guidance based on that knowledge

    If you need mentoring assistance, please contact the IFOPA or call (407) 365-4194

    If you would like to be a mentor, please contact the IFOPA or call (407) 365-4194. Even if you do not reside in the United States, please contact us and we will do what we can to find a mentor placement for you. 


  • published Gene Discovery in History of FOP 2015-09-24 15:57:40 -0400

    Gene Discovery

    In April 2006, after 15 years of painstaking research, the FOP research team at the University of Pennsylvania School of Medicine, and their international collaborators, pinpointed a single gene mutation -- one letter out of six billion in the human genome -- that causes the runaway bone growth of FOP. This groundbreaking discovery is being used to unlock the mysteries of FOP. Learn more about the University of Pennsylvania School of Medicine and meet the researcher who discovered the gene. 

    FOP is caused by a mutation of a gene for a receptor called ACVR1 in the bone morphogenetic protein-signaling pathway.

    Following the discovery of the gene, research efforts towards a treatment and a cure accelerated. The discovery of the FOP gene provides a highly specific target for future drug development that holds promise for altering not just the symptoms of the disease but the disease itself. It also allowed for the creation of animal models that can express the mutant gene, further enabling research and drug development.

    Read more about the news from 2006:

    Discovery of FOP Gene Offers New Hope for IFOPA

    Penn Researchers Discover Gene That Creates Second Skeleton

     


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