Patients and Families
Living Independently with Full Equality
What is a L.I.F.E. Award?
The L.I.F.E Awards began in 2003 as a way to provide people with a confirmed FOP diagnosis assistance in purchasing adaptive equipment, making home modifications, or paying tuition that improves their life with FOP. The L.I.F.E. Award program is a grant people with FOP may apply for.
How does the L.I.F.E. Award grant program work?
- Applicants must have a verified diagnosis of FOP which is confirmed by completing a profile in the IFOPA Patient Directory.
$1,800 USD is the lifetime amount granted to a person with FOP. Anyone with FOP can apply no matter their age or where they live in the world. However, people under 18 years of age must have a parent complete the application form.
- The grant can be applied for and used at any point in the person with FOP's lifetime. You decide if you will use all $1,800 USD at once or in smaller increments at different times throughout your life.
- There may be instances where importing regulations may prevent the IFOPA from shipping items to certain countries or the cost of importing may well exceed the $1,800 grant.
- There may also be times when the IFOPA is legally prevented from sending funds to certain countries and, unfortunately, grants in these countries won't be able to be funded unless regulations change.
Karen Kirchhoff, the IFOPA's Family Services Coordinator, is here to support you with gathering the information needed to complete your application. This support is available to you at any time throughout the year. Send an email to [email protected] or contact on WhatsApp at +1 913-558-1879.
- To ensure that available funds are made available to the community at the same time, completed applications can be submitted during the months of January and July. However, you're encouraged to decide on the exact items you need and begin gathering the required application information (see below) well in advance of the January and July deadlines. This will ensure you can submit your completed application at the first chance possible.
- The online application form can be translated and completed in any language.
The L.I.F.E. Award Committee is made up of FOP families who will review the submitted applications and prioritize the applications based on need (learn more below).
- Applications will be awarded based on available funds. Recipients will be notified by February 28 (for the January application period) or by August 31 (for the July application period) once the Committee has reviewed all applications.
Applications are prioritized based on a model of human needs commonly used by professionals in the health care field. Using this model, items related to the bottom levels of the pyramid are prioritized as those needs that are critical to the further development and well-being of the person.
Esteem (Status, recognition, respect)
Luxury brand items
Love and Belonging (Friendship, intimacy, family, sense of connection)
Smartphone, tablet, computer
Safety Needs (Personal security, employment, health, property)
Tuition, adaptive tools to promote hygiene/FOP symptom management (shower chair, bidet, sonic toothbrush)
Physiological Needs (food, water, warmth, sleep)
Pillow, bed pad, mattress, adjustable bed, adaptive clothing/shoes
Note: L.I.F.E. Awards may not be used for medical-related services including medications or therapy services.
How do I apply?
Step 2: Can be completed at any time – Gather information about the item(s) you want. Do this early so you have time to answer any questions about your request. You will need:
- Online link to the item you are requesting. Your lifetime grant limit is $1,800 USD per person (Click here for a free currency converter)
- Email and phone/WhatsApp for a contact person at the company or store who can help with the purchase
- Be prepared to explain how this purchase will help your daily life with FOP
Email [email protected] or send a WhatsApp message to +1 913-558-1879 for support gathering the information for your L.I.F.E. Award request.
Step 3: Complete your application between January 1-31 or July 1-31, 2024 – If steps 1 and 2 are done, you are ready to apply. Return to this page to complete your application by clicking the link that will appear below starting January 1, 2024. You will be notified within 2 business days whether your application is being submitted to the Committee for review in early February or if your application is incomplete.
How is the L.I.F.E. Award granted?
- By February 28 (for the January grant cycle) or August 31 (for the July grant cycle), you will be notified of the Committee’s decision.
- There are no guarantees that a request will be granted.
- Due to review time for applications, international wire transfer submission and shipping coordination, the processing of approved awards may take 1-2 months or longer to complete.
- Payment for the item, service or tuition will be paid directly to the vendor. In order to complete international purchases, assistance may be necessary from the applicant to coordinate payment with local vendors.
- If there are not enough funds to fulfill every approved applicant’s application, they will automatically be the first to receive their award in the next round of applications.
About the Harold & Elaine Kaplan Quality of L.I.F.E. Award
|Fred Kaplan, MD and Tina Bales Kaplan, MD|
|Elaine & Harold Kaplan|
In February 2019, Dr. Frederick S. Kaplan, Isaac and Rose Nassau Professor of Orthopaedic Molecular Medicine at The University of Pennsylvania and Co-Director of the Center for Research in FOP and Related Disorders, donated the monetary prize he received when he was awarded The Grand Hamdan International Award in Medicine to the IFOPA Quality of L.I.F.E. Awards Program. The gift was made in memory of his beloved parents, Harold & Elaine Kaplan.
From Dr. Kaplan:
My parents adored and admired the FOP community. They loved meeting the FOP patients and families, attending many of the FOP events over the years, and hearing about the progress toward better treatments and a cure. My parents made it possible for me to attend medical school and to obtain the education that ultimately led me to a scientific, medical and emotional journey dedicated to the FOP community over the last 30 years.
My mother suffered from the ravages of Multiple Sclerosis for over 50 years. It greatly affected the quality of her life. My father dedicated his life to making her more independent and comfortable and helping her live each day to the fullest. I hope that a gift like this will symbolize how grateful I am to both of them for showing me the importance of the quality of life – and how deeply I want to improve the present – as well as the future – for the FOP community.