Dear FIRST Members and Friends,

I offer a warm hello to all of you in my first letter as President of FIRST. The past year has seen great change and growth at the foundation—we now have over 5,000 affected members!—and our staff, board of directors, and board of medical and scientific advisors have all made significant additional investment of time and resources to ensure FIRST remains at the forefront in meeting the complex needs of the ichthyosis community. In both the social media landscape and in genetic understanding and technology, the world is evolving rapidly. FIRST continues to refine its organization and priorities to keep pace with this dynamic change. On behalf of all the constituencies committed to FIRST’s mission to educate, inspire, and connect, I pledge that FIRST will meet the coming challenges with passion and a commitment to success.

Allow me to provide some context for my involvement and devotion to the Foundation. FIRST connected my family with the medical researchers who changed my daughter’s life. In 2009, Sasha, then nearly three, suffered from an undiagnosed and untreatable condition. My wife Allison and I endured years of conflicting opinions and questionable and risky recommendations. We lost faith that the healthcare profession could help. Then, at FIRST’s Patient Support Forum in Mystic, Connecticut, we encountered the warmth, compassion, and knowledge of Jean Pickford and Moureen Wenik. They received our daughter not as a medical puzzle, but as a human being in need of support and answers. They connected us with Dr. Keith Choate, who said, “I know what this is, and we can help.” This distills the crucial importance of FIRST. Ichthyosis is a rare condition with which many physicians have no experience; the connections FIRST provides can be life changing. Through Dr. Leonard Milstone and Dr. Choate—both leaders at FIRST—we obtained genetic confirmation that Sasha has CHILD syndrome, a rare form of ichthyosis. This knowledge created the starting point from which we are now developing effective treatments. We are forever grateful for this personal miracle and are determined to help FIRST continue to change the lives of families like ours. It is a privilege to be on this journey and we have considerable ambitions for FIRST’s growing impact, but if my time as president helps even one family as much as FIRST helped mine, I will count it a great success.  I invite you to learn about some highlights from the past year; why I believe FIRST makes a crucial difference; and what FIRST hopes to accomplish in the future.

In becoming President of the Board of FIRST, I follow in some illustrious footsteps. I’ve had the privilege of working closely with two former Presidents, Mike Briggs and Dave Scholl, and am excited to build upon their more than ten years of leadership!  During the past year, through an impressive collaboration among FIRST members, FIRST staff, and the board, we have developed a new four-year strategic plan to support FIRST’s updated mission statement: “To improve lives and seek cures for those affected by ichthyosis and related skin types.”  The astute financial management of our current and former chief financial officers, Larry Silverman and John Schoendorf, has enabled FIRST to invest in additional staff time. This facilitates greater outreach; optimizes printed and digital communication programs, as well as our use of social media; and keeps us abreast of cutting-edge medical technology. We are the primary source of insight for ichthyosis-related issues, and we intend to maintain our presence as the locus that brings all of the ichthyosis communities together. 

One of FIRST’s deepest missions is to help members share and solve the daily problems of managing their condition. We all understand the need for better daily skin treatments—right now!  FIRST’s upgraded infrastructure enables more interaction among members—via calls, blogs, emails, etc.—and more insight from the experts on FIRST’s Medical and Scientific Advisory Board (MSAB).  Great treatment insights can come from any member and the more we reach out, the more we learn.  Our “No Child Left Unknown” program strives to contact every one of the roughly 300 babies born annually with moderate to severe ichthyosis.  We reach more families every year; our vision is to reach every family. The more connections we make, the more lives we can change.  I met personally with several new families at the Miami patient forum last August and witnessed how sharing stories brings hope.  My own email correspondence with FIRST members galvanizes my dedication to the foundation.  Every single person has something important to say; FIRST strives to combine these voices into a powerful force for advocacy.                                    

FIRST is very fortunate to have on its board and the MSAB, the worldwide leading medical experts in ichthyosis and related skin types. We are unique in how we connect these individuals and their institutions. This enhanced discourse among experts, the current genetic revolution, and the advent of pathogenesis-based personalized medicine, provides a high-powered (and singular!) recipe for medical and scientific breakthroughs. We intend to harness FIRST’s relationships with these leaders and their powerful organizations to pull the future closer, sooner! A major first step has been to deepen FIRST’s relationship with the Ichthyosis Registry at Yale (IRAY). This will provide decisive answers about specific gene mutations to affected individuals; it will also offer a comprehensive pool of information to global researchers. The cumulative result of this is better data, which, over time, equals better insights—which increase the chance of breakthrough concepts and treatments. Genetic research is here and FIRST is playing an important role. Stay tuned for more to come on this project in 2016!

FIRST has accomplished a great deal in thirty-five years. We are now at a major inflection point where the support we’ve offered and the data we’ve gathered can dovetail with the needs and visions of high-level research. It is time to accelerate our process. We want to reach more families faster and encourage greater genetic understanding sooner. This requires your support.  Support comes in many forms. We need volunteers to assist new families as they adapt to a world that includes ichthyosis; we need members to host informal events to increase ichthyosis awareness in local schools and communities; and, as always, we need donations. FIRST has a long history as a successful, change-driving, and beloved organization; all of this is due to the power and commitment of you, FIRST’s individual members. Please join with us to help FIRST provide the support and leadership necessary to change the lives of those affected around the world by ichthyosis and related skin types.

On behalf of FIRST’s staff, board of directors, and MSAB, I thank you for your commitment to FIRST, and I very much look forward to seeing as many of you as possible at our National Conference in San Diego this summer!

My best regards,

Jeff Hoerle

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