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Complete Annual Report 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, VLJQL¿FDQWKLJKOLJKWWKDW,¶GOLNHWR Lisa Breuning. Lisa is a familiar face to expand upon, as I believe this many of our members, as she has been a PLOHVWRQHPD\EHWKHPRVWVLJQL¿FDQW dedicated member of our team for nearly RIWKH\HDU±ZHKDYHUH¿QHGRXU 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 \HDURXUFRPPXQLW\KDVJURZQÀRXULVKHGDQGEURXJKWXV UHODWLRQVKLSV/DVW\HDU/LVD¶VUROHVKLIWHGIURP 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. RIRXUPHPEHUVEXWZH¶YHWDNHQDGHHSHUORRNDWHDFK “My role as Director of Member Relations is completely LQGLYLGXDO¶VSHUVRQDOFRQQHFWLRQZLWK),5677KHLQVLJKWV different than my role as Communications Coordinator. I ZH¶YHFROOHFWHGWKURXJKVXUYH\VPHPEHUHQUROOPHQWHYHQW DPDPRUHOLQHDUWKLQNHUVRWKLVLVDJRRGÀWIRUPH0\ SDUWLFLSDWLRQGRQDWLRQVDQGVSHFL¿FUHODWLRQVKLSVKDV 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 SHUVRQDOOHYHO:H¶YHGUDZQQHZFRQFOXVLRQVDERXWRXU 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 IDFWWKDW),567¶VODUJHVWJURXSRIVXSSRUWHUVLVDOVRRXU members. Streamlining some of the day-to-day tasks has SDWLHQWV¶PRVWYLWDOVXSSRUWV\VWHP±WKHLUIDPLO\ also been a focus, enabling the staff to get the information 7KURXJKDSRLQWHGDSSURDFKWRGDWDDQDO\VLVZH¶YH 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 DUHOHDUQLQJWKDWDIDPLO\¶V¿UVWFRQWDFWZLWK),567LV 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 is leading us to a path of more relevant programs and All the best, 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 ZZZ¿UVWVNLQIRXQGDWLRQRUJ 3 <RXUYROXQWHHUDFWLYLWLHV¿QDQFLDOJLIWVDQGVXSSRUWRIRXUSURJUDPVDVVXUHGWKDW 4,983 affected individualsEHQH¿WWHGIURP),567HGXFDWLRQVXSSRUWDQGUHVHDUFK 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 132 Regional Support Volunteers. H[SHUWVLQWKH¿HOGRIGHUPDWRORJ\VHUYHRQWKH 0HGLFDO 6FLHQWL¿F$GYLVRU\%RDUGDQG3K\VLFLDQ 2,472 donors. 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 \HDU¶V),567WR.QRZ&DOOV 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 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 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 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 'U5\DQ2¶6KDXJKQHVV\WRFRQWLQXHKLVZRUNLQ 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 ZZZ¿UVWVNLQIRXQGDWLRQRUJ 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% SHUVRQ¶VOLIHWLPH Research -/HYHUDJH),567¶VUHVRXUFHVWRKHOS connect researchers and other organizations to EHQH¿WRXUPHPEHUV General Donations - 27% Fiscal Year 2015 - Expense Revenue - Achieve annual Total $822,3051 fundraising goal greater Fundraising - 13% Programs, Support than $1 million & Research - 77% Management - 9% A Dedicated Doctor Takes on a New Role in the FIRST Family Join us in welcoming Moise Levy, MD, as the new President of FIRST’s Medical DQG6FLHQWLÀF$GYLVRU\%RDUG 'U0RLVH/HY\SK\VLFLDQLQFKLHIDQGFKLHIRISHGLDWULFGHUPDWRORJ\DW'HOO&KLOGUHQ¶V0HGLFDO &HQWHUKDVVHUYHGRQ),567¶V0HGLFDO$GYLVRU\%RDUGRI'LUHFWRUVIRUWKHSDVWHLJKW\HDUV Dr. Levy is a steadfast supporter of the mission of FIRST as well as a beloved participant in many RI),567¶VVXSSRUWPHHWLQJVDQGFRQIHUHQFHV:HDUHGHOLJKWHGWRHPEUDFH'U/HY\¶VYLVLRQ DQGHQWKXVLDVPIRU),567¶VHYROYLQJUROHLQWKHODQGVFDSHRISDWLHQWDGYRFDF\DQGLFKWK\RVLV research. We are inspired by his deep compassion for those living with ichthyosis, or a related skin type, and his never ending quest for better treatments to help them live the best quality of life possible. Please join us in welcoming Dr. Levy to his exciting new role as president of the Medical DQG6FLHQWL¿F$GYLVRU\%RDUGDW),567 ´)URPP\HDUO\DIÀOLDWLRQZLWK),567WKURXJKWKH06$%ZLWK0DU\:LOOLDPVDQG PRVWUHFHQWO\ ZLWK/HQ0LOVWRQHWKHLQWHQW RIWKH06$%KDVEHHQWRSURYLGHVRXQGPHGLFDODGYLFHWRRXUSDWLHQWVDQGIDPLOLHVDQGWRSURYLGHPHQWRULQJWRRXU\RXQJHUFROOHDJXHV :KLOH,FDQQRWSUHGLFWKRZRXUUROHVZLOOHYROYHRYHUWKHQH[WIHZ\HDUVIXQGDPHQWDOO\RXUUHVSRQVLELOLWLHVDUHWRRXUSDWLHQWVDQG IDPLOLHV:HZLOOFRQWLQXHWRZRUNLQDFROODERUDWLYHIDVKLRQZLWKWKHPWKURXJKDGYRFDF\PHGLFDODVVLVWDQFHPHQWRULQJDQGUHVHDUFK and to help our excellent staff to make this happen.” 'U0RLVH/HY\ ZZZ¿UVWVNLQIRXQGDWLRQRUJ 5 BOARD OF DIRECTORS Why FIRST Matters to Me %\),567·V3UHVLGHQWRIWKH%RDUGRI'LUHFWRUV-HII+RHUOH Dear FIRST Members and Friends, ,RIIHUDZDUPKHOORWRDOORI\RXLQP\¿UVWOHWWHUDV3UHVLGHQW help.” This distills the crucial of FIRST. The past year has seen great change and growth importance of FIRST. at the foundation—we now have almost 5,000 affected Ichthyosis is a rare condition with members!—and our staff, board of directors, and board of which many physicians have no experience; the connections PHGLFDODQGVFLHQWL¿FDGYLVRUVKDYHDOOPDGHVLJQL¿FDQW FIRST provides can be life changing. Through Dr. Leonard additional investment of time and resources to ensure FIRST Milstone and Dr. Choate—both leaders at FIRST—we remains at the forefront in meeting the complex needs of the REWDLQHGJHQHWLFFRQ¿UPDWLRQWKDW6DVKDKDV&+,/' ichthyosis community. In both the social media landscape syndrome, a rare form of ichthyosis. This knowledge created and in genetic understanding and technology, the world is the starting point from which we are now developing effective HYROYLQJUDSLGO\),567FRQWLQXHVWRUH¿QHLWVRUJDQL]DWLRQ treatments. We are forever grateful for this personal miracle and priorities to keep pace with this dynamic change. On and are determined to help FIRST continue to change the behalf of all the lives of families like ours. It is a privilege to be on this journey constituencies DQGZHKDYHFRQVLGHUDEOHDPELWLRQVIRU),567¶VJURZLQJ committed to impact, but if my time as president helps even one family as ),567¶VPLVVLRQ much as FIRST helped mine, I will count it a great success. to educate, I invite you to learn about some highlights from the past year; inspire, and why I believe FIRST makes a crucial difference; and what connect, I pledge FIRST hopes
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