Then this morning I watched the New York City Marathon with my daughter, Nicole, and the words started to come. While the fires continue to burn at Ground Zero, the sight of 30,000 determined runners crossing the Verrazano Narrows Bridge on this bright, beautiful day, some running in place of loved ones killed on the 11th, showed me that even as we mourn, we CAN move on. As we watched, I glanced at my 12-year-old daughter, recovering from her 5th MHE surgery in 27 months, and realized that we MUST move on. And move on we will! The Internal Revenue Service has approved our application and The MHE Coalition is now the non-profit organization we once only dreamed of! Tax-exempt status is retroactive to our January 17, 2001 incorporation in the State of Ohio. Our thanks to Donna MacDonell and Chele Zelina for the tremendous amount of time and effort they put into incorporating The MHE Coalition and obtaining our non-profit status. Their work continues, as does our appreciation, as they prepare and file the forms necessary for individual states.
* The National MHE Registry was formed in order to promote and expedite research.
* We continue our participation with Jacqueline Hecht, Ph.D., University of Texas Houston Medical School., in her Linkage Study in Hereditary Multiple Exostoses.
* Our participation in Jeffrey Esko's Multiple Hereditary Exostosis and Heparan Sulfate study at the University of California, San Diego was approved by the Human Subjects Committee of that University. Through the collaborative efforts of Sarah Ziegler, Beth Hayes and Phillip Gates, MD the Internal Review Board of Shriners Hospital for Children in Shreveport, Louisiana, has recently approved participation in this research. Families of MHE patients in that facility are now being informed of the research opportunities and support available to them through The MHE Coalition and The National MHE Registry.
* As the UCSD study is able to accept surgical specimens from adult patients, even more of our members are now able to participate in research.
* Sarah Ziegler, our National Director and Coordinator of Research, maintains regular communications with several researchers, as well as continually making new contacts and investigating new research being done.
*Chele Zelina continues the very difficult task of creating a directory of orthopaedic surgeons throughout the United States, in order to help those diagnosed with MHE in their search to find qualified doctors.
* The MHE and Me Handbook - A Guide for Family, Friends, Teachers, and Classmates, has been translated into Spanish and Japanese, and is in the process of being translated into German.
* We are working with both organizations and physicians specializing in pain management, and in our September newsletter began a continuing series of articles on this very important subject. Our sincere thanks go to Richard B. Patt, MD, for his contribution to this issue. We appreciate Dr. Patt taking the time from his extremely busy schedule to share his knowledge and expertise with the members of our organization.
* In addition to addressing pain issues, we have attempted to address other areas of concern in our newsletter, including the emotional implications of chronic illness on MHE patients and their families, disability information and resources, information on research, and more.
* Since last December, Susan Wynn and Suzanne Caputo have sent out over 50 "We Care" packages to children having surgery and their siblings, as well as to adult surgical patients, when possible. We appreciate the wonderful support we have received for this program in the form of donations of toys, candy, and gift items from so many families.
* Our thanks go to Amy and Carl James Hansen who have donated almost $600 to date from the sale of Carl's CD, "Twilight Moment". Amy and Carl will continue to donate to the MHE Coalition $10 from the sale of each $15 CD purchased by our members. The Twilight Moment CD Web Site has now been updated so that you can now hear samples of these beautiful, original compositions for piano and keyboard at http://www.geocities.com/carljamescd. If you wish to order CD's by mail, please mention that you are a member of The MHE Coalition, enclose a check or money order payable to Carl James Hansen for $15 plus $2 shipping and handling for each CD ordered and send, along with your name, address, telephone number or email address, to Carl James Hansen, P.O. Box 347, Arvada, CO 80001-0347, email: CarlJamesCD@hotmail.com.
* We will work with various research teams in the development of questionnaires that will provide new information and insights into the numerous manifestations of MHE. It is our hope these studies will be used to update medical literature and lead to a better understanding by the medical community of the effects and impact of MHE on their patients' lives. These questionnaires will be sent to those who have registered with The National MHE Registry. If you have not yet registered, please do so now. The forms are available on our web site, or you may contact Sarah Ziegler, Director, The National MHE Registry, 149-34 16th Road, Whitestone, NY 11357, 718/747-1701, Cell 917/841-2217, or email at dinosarah@prodigy.net or mheregistry@yahoo.com. We welcome registration by MHE patients throughout the world. While surgical specimens cannot be accepted at this time from outside the United States, your participation in the questionnaire studies is welcome and appreciated!
* We will continue to develop patient education and support information and literature.
* We will continue to expand and update the information available on The MHE Coalition and MHE and Me Web Sites, to keep the MHE community informed and to offer the tools, links and resources that will help people in their own searches for information
* We will continue to let children undergoing surgery, as well as their siblings, know that "We Care," by sending gift packages for each operation. Where possible, we will also send We Care packages to adult surgical patients.
* We will continue to offer support to individuals with MHE and their families.
We are doing our best to find and to help any and all families living with this disease, to learn all we can about MHE and share what we learn, and to do everything we can to find better treatments and, ultimately, a cure. We began with the premise that anyone affected by MHE is a member of our organization. We respond to anyone requesting information or help, whether by mailing packets of information anywhere in the world, or by calling people in need of support. We do everything we can to help the children who have MHE, and their brothers and sisters, whose lives are also affected by their sibling's doctor and physical therapy appointments, surgeries, pain, fatigue, and special needs. MHE is a family affair, whether one member of a family is diagnosed, or generations. In order to accomplish everything we have set out to do, we need the help of our larger family - the MHE community. We thank those of you who have supported us with donations, and with contributions of stamps and toys and gifts for the We Care packages. Your support has kept us going these past two years, but as our organization grows, so do our operating costs. We hope that those of you who have supported us in the past will continue to do so, and that everyone will do what they can to help us achieve our goals. Every contribution helps, whether it is a book of stamps, a box of small toys, or a donation in any amount. At this time of year when many worthy charities are asking for your donations, we hope that you will remember the children and adults living in pain, day in and day out, who undergo surgery after surgery. Working together, there will come a day when no child has to suffer from this disease.
And now, more than ever, we wish for peace on earth.
Chele, Susan, Sarah, Tim, Evelyn
and all the volunteers of The MHE Coalition
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