Dear Members and Friends of the Foundation:
I wish to begin my first annual letter by recognizing my predecessor Laura Phillips. As president from 2003-2005, Laura has worked closely with Jean Pickford, a highly effective staff, and her fellow officers and board members to keep FIRST moving forward. The mission of our organization is to provide education, service, resources, support and now its own research program dedicated to those with ichthyosis and related skin types. Laura has served this mission exceedingly well and thus FIRST entered 2006 as vibrant and financially sound as ever with tremendous opportunity in front of us all! Thanks Laura.
Fundraising is a key part of maintaining the highest level of service to our members. We are blessed by the hard work and the generosity of so many. FY 2005 was another successful year in this regard in many ways.
Member donations and grass roots, special events are so critical to meeting our needs, including the 6th annual Monster Dash in Friendswood, TX to a car wash held by members of the National Honor Society of Flandreau High School in South Dakota to selling bracelets at Central Middle School in Grafton, North Dakota, and the many creative ideas in-between from active members across the country. We are continually amazed at the awesome support and energy displayed by so many of all ages for the important work promoted by FIRST.
As in recent years, large benefactor gifts were committed in 2005 for dedicated research activities in EHK, Lamellar/CIE and Ichthyosis-related skin disease (any type), and many repeat as well as new corporate donors came through with sizeable gifts as well. In Q1 2006, we announced a new and exciting partnership between FIRST and Project Save Our Skin (SOS) of Fort Worth, TX. The brainchild of Cort DeHart and his wife, Elizabeth Barry after the birth of their daughter, Project SOS and FIRST will join forces to fund a research grant focused on investigating the causes, treatments and potential cures for lamellar Ichthyosis.
Armed with "start-up" funding support and under the technical leadership of Dr. Len Milstone and the administrative support of Maureen Tierney, the Research Committee worked feverishly in 2005 to establish the required elements to launch the Request for Proposals (RFP). Initiating FIRST's Research Program in Q1 2006 truly represents a watershed event for our members and organization. Grant applications will soon be peer reviewed and we expect awardees will be announced at the National Family Conference in Atlanta, GA (June 30-July 2); soon, important research projects will be ready to begin in earnest!
The compelling CD entitled "Living with Ichthyosis: A Teenage Perspective" was a major educational tool developed for FIRST in 2005. The CD was produced by Justin Tormey's large donation of skill and resources (president of ASAP Productions, New Hope, PA), and with a grant from Operation Good Neighbor Foundation to underwrite the costs of production.
The CD is a powerful story starring eleven very confident, fun-loving young men and women intended to educate young people, parents and friends about Ichthyosis; what stands-out, in my view, is how these teens candidly discuss tough issues they faced growing up with their disease including topics from skin care techniques, friendships, and dating to participation in extracurricular activities and achieving their future goals. The CD is a must-see for all and is now available for purchase directly from the organization.
The board administration highlight of the year was our November retreat in Philadelphia. The meeting provided all board members the opportunity to interact on topics of effective fundraising, the Research Program and policy to govern it, and to develop various programs focused on reaching out to all potential donors through an annual leadership campaign program. Successful fundraising initiatives will become more important to continue the research program that was authorized in 2005 and will be initiated in 2006.
Several board members were recognized for their dedication to FIRST as their terms expired and several more joined the board as new members for three year terms. We commend the work done by Dr. Gloria Graham in providing leadership both as a long term member and through her board development role.
As we embark on several ambitious future goals and prepare to celebrate our 25th anniversary as an organization, we look especially forward to three major upcoming events in San Francisco (March), a fundraising testimonial dinner to honor the founding role and service provided for so many years by Drs. Mary Williams and Peter Elias, the meeting of the Foundation's Medical and Scientific Advisory Board, and in Atlanta (June 30-July 2), our National Family Conference whose theme this year is Soaring to New Heights.
In closing, FIRST has accomplished many good things through the wonderful deeds of many good people over the past 25 years. With the continued strong support of our members, friends of the Foundation, corporate sponsors, staff and board members, FIRST is well positioned to provide greater assistance and service to people with Ichthyosis and related skin types for years to come! We look forward to working jointly with you to exceed our goals in 2006.
Sincerely,
David R. Scholl
