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Ichthyosis Focus Spring 2016 a Quarterly Journal for Friends of FIRST Volume 35, No Ichthyosis Focus Spring 2016 A Quarterly Journal for Friends of FIRST Volume 35, No. 2 The Year in Review2015 Annual Report Last Chance, National Conference June 24-26! The Kocher family, recipients of the 2015 Volunteer of Year Award Inside This Issue: FIRST Annual Report 3 RAISE 11 Conference Registration Form 13 & 14 Living Well with Ichthyosis 15 FIRST Advocates 15 Vol. 35 No. 2 Spring 2016 Copyright © 2016 Correspondence by the Foundation for Ichthyosis & Related Skin Types, Inc.® Ichthyosis Focus is published quarterly Corner by the Foundation for Ichthyosis & Related Skin Types, Inc.® Dear FIRST Foundation, Requests to reprint information “FIRST has had such a positive effect on my life. Just reading FIRST’s Ichthyosis contained in the Ichthyosis Focus Focus makes me feel like I am not the only one suffering from ichthyosis. That is should be directed to the editor. a true gift!” The Foundation for Ichthyosis Rich Graham & Related Skin Types, Inc.® 2616 N. Broad Street “The day my daughter was born, I found your website on my phone while in absolute Colmar, PA 18915 despair. I was so grateful to read stories of people living full lives with ichthyosis. It Phone: 215.997.9400 made me feel a lot more relaxed. When we left the NICU our doctors literally just Toll-free: 800.545.3286 printed pages from FIRST’s website for us because it is absolutely the best Fax: 215.997.9403 information available.” Email: [email protected] Janet Holt Web: www.firstskinfoundation.org Chief Executive Officer “The foundation is doing a great job of keeping everyone connected and up-to-date on Jean Pickford all the newest solutions and findings. We pray that our son still continues to get better Editor as he gets older.” Maureen Neville Blake Harrington Medical Editor Amy Paller, MD Editorial Assistant Have you been receiving emails from FIRST? Kimberly Cole If not, contact Lisa Breuning at [email protected] to have your current email address added to our lists. The Foundation for Ichthyosis & Related Skin Types, Inc.® is a 501(c)3 charitable organization supported by public and private donations. All contributions to the Foundation are tax deductible to the full extent of the law. The editor invites your correspondence. We welcome your comments, observations and suggestions. Please send your letters to Ichthyosis Focus at the address listed above. Ichthyosis Focus is provided as a service to members of the Foundation as a medium for the free exchange of information. Neither the Foundation for Ichthyosis & Related Skin Types, Inc.® its Board of Directors, its Medical Advisory Board nor the Focus Editors endorse any treatments or products in Ichthyosis Focus. Views and opinions expressed in this publication do not necessarily reflect the views of the Foundation or Foundation officials. PAID ADVERTISEMENT CEO 2015 ANNUAL REPORT Changing World, Changing Ways... FIRST’s Mission Statement: To improve lives and seek cures for those affected by ichthyosis and related skin types. “Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.” –Margaret Mead So, what did we accomplish in 2015? whom we communicate, reaching targeted audiences Lots! Many of our accomplishments with messages that are relevant to their own personal have been featured in our connection to FIRST. publications, website, and social A key player in this new communications media posts. However, there is one effort is a long-time member of our staff, significant highlight that I’d like to Lisa Breuning. Lisa is a familiar face to expand upon, as I believe this many of our members, as she has been a milestone may be the most significant dedicated member of our team for nearly of the year – we have refined our nine years. In addition to her analytical approach on how we communicate eye and technical savvy, over the years, and serve our members. Lisa has gained a keen and comprehensive As you know, we have been supporting our mission and understanding of our membership base connecting our community for over 35 years. And each and the technology to manage their year, our community has grown, flourished and brought us relationships. Last year, Lisa’s role shifted from one step closer to where we stand today – as the global Communications Coordinator to Director of Member leaders in ichthyosis advocacy. In 2015, we not only Relations, which has proved to be an invaluable transition continued to embrace and serve the needs and requests for our members and for FIRST. of our members, but we’ve taken a deeper look at each “My role as Director of Member Relations is completely individual’s personal connection with FIRST. The insights different than my role as Communications Coordinator. I we’ve collected through surveys, member enrollment, event am a more linear thinker, so this is a good fit for me. My participation, donations and specific relationships, has goal for the database is to maximize all of the functionality helped us to better understand our membership on a more that is available and better utilize the information that we personal level. We’ve drawn new conclusions about our collect. If our information is up-to-date, consistent, and support channels and recognize emerging data, like the comprehensive, then we can better advocate on behalf of our fact that FIRST’s largest group of supporters, is also our members. Streamlining some of the day-to-day tasks has patients’ most vital support system – their family. also been a focus, enabling the staff to get the information Through a pointed approach to data analysis, we’ve that they need as expediently as possible.”- Lisa Breuning deepened our knowledge of who our members are, and Conversations and feedback from our members are an what they precisely need from FIRST. For instance, we integral part of our success. On behalf of our staff, we look are learning that a family’s first contact with FIRST is forward to connecting on a greater level with as many of most often through an extended family member, or that our you as possible, and learning more and better ways to medical professional members have the longest retention serve this amazing community. rate of active involvement in FIRST. All of this information All the best, is leading us to a path of more relevant programs and communications, expansion of our potential for patient advocacy, and enhanced service to our entire community Jean Pickford throughout their lives. Our new approach is a true result of CEO, FIRST a changing world. We are reformulating how and to www.firstskinfoundation.org 3 Your volunteer activities, financial gifts, and support of our programs assured that 4,983 affected individuals benefitted from FIRST education, support, and research. THE CHALLENGE • 250 – 400 babies are born with some form of moderate • Genetic tests are available for 32 different gene to severe ichthyosis in the US each year. mutations that are known to cause ichthyosis. • 50 newborns and their families contact FIRST annually. • 0 known cures for ichthyosis. MISSION PROGRESS 205 nationally and internationally recognized experts in the field of dermatology serve on the 132 Regional Support Volunteers. Medical & Scientific Advisory Board and Physician donors. 2,472 Referral Listing. 633 Affected families joined in 2015. $14,750 awarded through UFIRST scholarships in 2015 to 11 young adults with ichthyosis. EDUCATE INSPIRE 55 people participated in this “Member stories we read on the website help year’s FIRST to Know Calls. us to realize we are not alone. They are a true 124 educational, informative and inspirational e-communications gift for our affected son.” were sent to over 7,320 affected - FIRST Member Donna Kober families, friends, and medical professionals. 267,679 users viewed our website in 2015. 4 quarterly issues of FIRST Ichthyosis 51 RAISE partners generated $66,417 Focus were delivered to 4,350 affected from 768 donors worldwide in households each quarter of 2015. our inaugural year. In 2015, the FIRST blog, Voices in our 62 events were held in Community, received 5,900 visits from communities across the globe, raising $155,000. 19 different countries. CONNECT RESEARCH 4 Patient Support Forums held in the US and Canada, $50,000 research grant was awarded to connecting over 150 individuals or families with leading Dr. Ryan O’Shaughnessy to continue his work in dermatologists and the ichthyosis community. targeting the scaling pathways in ichthyosis. 221 Regional Support Network referrals. $50,000 research grant was awarded to Dr. Brittany Craiglow for her study standards of 195 physician referrals. care for newborns with ichthyosis. 322 people tried a new product thanks to the product listing. 4 www.firstskinfoundation.org LOOKING AHEAD FINANCIALS TO 2016 - 2018 Fiscal Year 2015 - Revenue Total $789,461 Grassroots & GOALS Investment Income - 7% Special Events - 32% Membership Engagement - Trustworthy and compassionate support, reliable information and useful Research, Grants resources through engaging relationships throughout a & Scholarships - 33% person’s lifetime Research - Leverage FIRST’s resources to help connect researchers and other organizations to benefit our members General Donations - 27% Fiscal Year 2015 - Expense Revenue - Achieve annual Total $822,3051 fundraising goal greater Fundraising - 13% Programs, Support than $1 million & Research - 77% Management - 9% A Dedicated Doctor Takes on a New Role in the FIRST Family Join us in welcoming Moise Levy, MD, as the new President of FIRST’s Medical and Scientific Advisory Board Dr. Moise Levy, physician-in-chief and chief of pediatric dermatology at Dell Children’s Medical Center has served on FIRST’s Medical Advisory Board of Directors for the past eight years. Dr. Levy is a steadfast supporter of the mission of FIRST as well as a beloved participant in many of FIRST’s support meetings and conferences.
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