Letter from the Executive Director
Dear HEA Members and Friends:
It has been quite a while since I have written a general letter to members. This year I completed my fifth year as your executive director. I have learned more than I have given, but I am so proud of the many accomplishments our team has achieved. As I am sure you are aware, we are a volunteer staff and it takes countless hours to create and maintain our website; write, publish, and distribute our newsletter; create and implement fun income-producing fund-raisers; answer email and phone questions from around the world; and accomplish the monumental task of putting on our conferences. This is truly an act of love and dedication that very few do for so many.
We are all facing a tough economic time. Nonprofits are facing huge funding cutbacks, traditional fund-raising events are seeing diminished results, and major donors have dramatically reduced charitable giving. Our income has never been lower, and we too have cut back many services we had hoped to provide. I am asking everyone to consider making a donation, renewing your membership, or most importantly giving of your valuable time.
We really need volunteers who could help HEA accomplish the following:
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Search out and contact websites of interest to people with hypospadias or epispadias to ask if they will post a link to the HEA website.
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Act as the HEA Member Liaison to keep track of memberships; get suggestions for improving our website, newsletters, and conferences; and start a monthly email letter to members highlighting news and fostering member-to-member contact.
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Act as the HEA Media Representative to search out media sources which will publicize HEA in some way and to field questions and requests for interviews from media folks.
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Be responsible for the printing and mailing of the HEA Newsletter (we’ll reimburse you for costs).
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Act as HEA Professional Liaison to develop a list of hypospadias and epispadias specialists around the world and start a quarterly email letter to establish and maintain connections with these people.
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Search out and compile a list of professional organizations of urologists, plastic surgeons, urologic nurses, child life specialists, social workers, and therapists worldwide and add the list to our website.
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Seek out drawings or other graphics explaining hypospadias and epispadias that we could post on our website.
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Act as Conference Facilitator to work with the HEA Board in doing the nitty-gritty work necessary for making our October 2010 Conference/Retreat in San Antonio, Texas, happen.
If our website represents the brain of HEA, it follows then that our conference is the heart. We have gathered in Denver, Toronto, San Jose, New York City, Norfolk, and Pittsburgh, and now we are heading to San Antonio over the Columbus Day Weekend (October 9-11, 2010). We always hope for hundreds of attendees, but historically we have remained under a hundred old faces and new, adults, teens, parents, and health care providers. We do, however, put on amazing conferences with the best experts and discussion groups. As important as the medical information is, we never give enough time for discussing the emotional impact of living lives with genital differences. This year we hope to provide a different experience. We will travel this year to our Board Member and former Executive Director Doug Jasper’s home in San Antonio. We will stay at a nearby hotel. Sessions will be held in the hotel’s conference room and informal discussions and recreation time will take place on Doug’s vast property. Jim Lake calls it our “Epi Curious Hypo Hoe Down.” This will be a weekend of discussions, music, swimming, bonfires, and barbecues. We hope to bring in experts offering to listen, learn, educate, and answer questions all weekend long (this time without PowerPoint presentations). I am excited that this event will bring our community together in a powerful and loving way to share stories and provide a venue for healing tears and sharing laughter. I strongly urge you not to miss this one!