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The Thyroid Foundation of America
A Look at Plans and Perspectives for 2001 from America's Largest Thyroid Patient Organization

by Mary Shomon

January, 2001 -- Kevin R. Laverty is the new Administrative Director of the Thyroid Foundation of America (TFA). We had a chance to speak with Kevin in January of 2001 to find out more about TFA's latest activities and future plans.

Mary Shomon: The Thyroid Foundation of America is a non-profit charitable organization created in 1985 to help educate both patients and health professionals about thyroid disease, and to help increase public awareness. How many members do you currently have, and what percentage of them are patients, versus practitioners?

Kevin R. Laverty: We have roughly 4,500 members as of 12/1/00. The vast majority of our members are thyroid patients or family members - approximately 99%.

Mary Shomon: What are the benefits of membership, for someone who might be interested in joining TFA?

Kevin R. Laverty: Our newsletter, The Bridge, and the satisfaction of knowing that you are helping someone else out there who has a thyroid problem get information and support. (The membership fee also includes your choice of a free book and article reprints.)

Mary Shomon: I know one of the key things TFA does from an outreach and public awareness standpoint is operate an 800 line. Can you tell us a bit more about that line -- how many calls you get per year, and what sort of information people can get via telephone?

Kevin R. Laverty: Our 800 line is perhaps the most important service we provide. It is available 24 hours a day, 365 days a year. To date in 2000 we have received nearly 20,000 phone calls. We answer the phone personally during business hours Monday-Friday, but callers can leave messages anytime. You can request a packet of info or have one of the staff call and talk to you personally. We encourage callers to ask specific questions so we can tailor the info to their concerns. If we can't answer your question chances are we can send you to someone who can.

Mary Shomon: TFA runs local chapters and and interest groups. How many local chapters and interest groups are there, and how can people find out if there's a local chapter or group in their area?

Kevin R. Laverty: Unfortunately our chapter network is in disrepair. At its height we operated chapters in MA, NY-NJ-CT, MD, NC, FL, TX, and CA. Currently the only active chapters are in NY-NJ-CT and MD.

Mary Shomon: What suggestions or information does TFA have for patients who wish to start their own chapter or interest group in an area that isn't already being served?

Kevin R. Laverty: At the moment TFA is not the position to sponsor new chapters. We'd like to in the future, but I really can't give a timetable. If any patients out there would like to start a support group, we recommend finding a physician that is willing to advise the group. If you would like to start a support group, please let us know, we may be able to put you in touch with a physician willing to help.

Mary Shomon: Are there any thyroid patients currently serving on TFA's board or executive council, or is it solely made up of medical experts and corporate sponsors? How are the perspectives and interests of thyroid patients factored into TFA's goals, objectives, and plans?

Kevin R. Laverty: Of our 10 Board members, 5 are thyroid patients and 3 are endocrinologists specializing in thyroid. We do our best to respond to feedback given to us by our members, and to do what we see as having a positive effect on the thyroid community. We can't read minds, so if any of you have any concerns or suggestions drop us a line and let us know. The largest limiting on the projects that TFA has undertaken to date is funding and, although people have been very generous this year, there are still projects that haven't gone forward because of lack of funds.

Mary Shomon: What percentage of the organization's funding comes from pharmaceutical companies? What is TFA's philosophy regarding balancing the marketing interests of pharmaceutical corporate sponsors versus the organization's mission and the interests of patients?

Kevin R. Laverty: We do receive funding from pharmaceutical companies, however it makes up less than 25% of our overall budget. The remaining funds come to us from generous friends and grants from other non-profit foundations. TFA believes that thyroid patients have a right to know what's out there. In this spirit we have mailed materials to our members on behalf of pharmaceutical companies, but we never share our mailing list. If we feel that it is information that is helpful to our members we mail it out. We do not favor one company over another.

Mary Shomon: TFA has been noticeably absent in the entire issue regarding regarding Synthroid's class action lawsuit, did not get involved in the issue regarding Marriott's advertising campaign that mocked thyroid patients, and has not taken a position on other situations where thyroid patient rights were in question. That makes me suspect that TFA really sees its role more as general awareness and education, and not as advocate or even "lobbyist" for thyroid patient issues. What are your thoughts about that?

Kevin R. Laverty: Article II of TFA's by-laws reads: "The purposes shall be to provide information and support to thyroid patients and their families." We would like to take a more active role as an advocate of thyroid patients and, indeed, we acknowledge that we have not done so to date. Right now we are strengthening our internal structure and we may be able to take on advocacy projects in the near future, but TFA's main goal will always be to educate and support patients, their families, and the public.

Mary Shomon: Many patients are interested in knowing if more research is being done on the causes -- and even prevention -- of thyroid problems, as well as dietary and environmental factors that can cause or worsen thyroid problems. Is TFA involved in any research or programs into these areas?

Kevin R. Laverty: TFA has been involved in clinical research to investigate some of the factors that may cause thyroid problems. Currently we are contacting the physicians on our Medical Advisory Council and trying to organize a long term follow-up of treated Graves' disease patients to determine what problems develop after treatment and how to prevent them.

Mary Shomon: Given the number of calls you receive, and the thousand emails I answer every week, it should come as no surprise to either of us that many patients who are receiving what endocrinology would deem the best possible treatment for their thyroid conditions are still suffering from a host of symptoms and are looking for better answers and treatments. What sort of plans, research or programs does TFA have on the slate to address this widespread problem.

Kevin R. Laverty: In addition to the long term follow-up described above, Dr. Wood, our Medical Director, has begun to cautiously investigate literature on herbal and other alternative therapies.

Mary Shomon: In 2000, research studies found that as many as 13 million Americans may have undiagnosed thyroid conditions. What does TFA plan for 2001 to help reach some of those undiagnosed people with information about thyroid disease that might help them get diagnosed?

Kevin R. Laverty: In light of the recent studies we do have some high profile projects planned, but, as our funding for them in not completely secure, I really can't talk about them. I don't want to make any promises that I can't follow though.

Mary Shomon: I understand that TFA will be introducing a new website in 2001. Can you give us an idea of what some of the new features of the site will be? What is the new URL? And when exactly will the new site be officially "launched?"

Kevin R. Laverty: The URL of our new site is www.allthyroid.org. Parts of the site are up and operational right now, but the official launch is scheduled for early December 2001. I cannot speak at length about the sites new features because they are still in committee and not finalized.

Mary Shomon: I know that TFA has moved in late 2000. Can you provide the new contact information so folks will know how to get in touch with TFA?

Kevin R. Laverty: First, let me thank all our members and supporters who gave us that little bit extra. Without your support we would not have been able to accomplish this move. With that said, our new address is 410 Stuart Street, Boston, MA 02116. Our 800 line has remained the same at 1-800-832-8321. If you are in the Boston area, our local number is 617-534-1500 and our fax is 617-534-1515. You can email us at info@tsh.org or info@allthyroid.org.

Mary Shomon: If someone is interested in joining TFA, how much does it cost, and how can they go about doing so?

Kevin R. Laverty: Our membership fee is currently $25.00 ($15 for seniors over age 65). If you would like to join, please call, write, email, or fax us and we'll send you an application.

Mary Shomon: Is there anything else you'd like to share with the About Thyroid site readers?

Kevin R. Laverty: If you need information about thyroid problems, a physician referral, or just someone to talk to and listen, call us. We are here to support you, thyroid patients and family members, and to provide information to the public. Period. If there is something you would like to see investigated or explained, please let us know and we will do our best to address it. The road to good health can be bumpy, but we like to think we make it just a little bit smoother.

Thyroid Foundation of America
410 Stuart Street
Boston, MA 02116

Toll Free TFA Hotline: 1-800-832-8321
TFA Main Phone: (617) 534-1500
Fax: 617-534-1515
Email: info@tsh.org or info@allthyroid.org.

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