Sample letter
Use the following as a guide for your correspondence. Be sure to personalize the letter to the extent that you feel comfortable
with.
Dear [your United States or State representative]:
I am writing to you as a constituent of this great state of _______ and on behalf of the MHE Research Foundation a
non-profit-organization that is committed to finding a treatment and cure for this rare genetic bone condition known as Multiple
Hereditary Exostoses /
Multiple Osteochondroma's
MHE is a genetic bone disorder in which benign cartilage-capped bone tumors that grow outward from the metaphyses of long
bones, growth plates of long bones or from the surface of flat bones throughout the body.
These Exostoses / Osteochondroma's can cause numerous problems, including: compression of peripheral nerves or blood
vessels; irritation of tendons and muscles resulting in pain and loss of motion; skeletal deformity; short stature; limb length
discrepancy; chronic pain and fatigue; mobility issues; early onset arthritis; and an increased risk of developing chondro-
sarcoma, reported risk of 2%-5% over life time.
It is not uncommon for MHE / MO / HME patients to undergo numerous surgical procedures throughout their lives to remove
painful or deforming Exostoses / Osteochondroma's and or to correct limb length discrepancies and improve range of motion.
Surgery, physical therapy and pain management are currently the only options available to MHE / MO / HME patients, but their
success varies from patient to patient and many struggle with pain, fatigue and mobility problems throughout their lives.
In addition, MHE research will uncover discoveries that will has the potential to effect millions of lives, specifically those who
suffer more common bone related conditions such as arthritis, osteoporosis, other therapeutic applications including
inflammation, cancer, neuron degeneration and cardiovascular disorders.
Add support to your information by including your own personal story. Introduce yourself as either a person with MHE or as a
friend, family member or loved one of a person with MHE. Describe how MHE has negatively impacted your life and the life of
your loved one. If you choose to include this information, this section should be no more than a few paragraphs.
In closing, I am writing to ask for your support in securing funds for the MHE Research There are a number of laboratories
located in the US that are researching MHE.
Your support is imperative in order to raise public awareness of MHE, to improve the lives of those afflicted with MHE, and to
secure funding to further MHE research.
If you have any further questions or would like more information about how you can help the MHE cause, please feel free to
contact me at your convenience. For more information about MHE, please visit the MHE Research Foundation web site at
www.mheresearchfoundation.org
Sincerely,
(Your signature here)
Name
Mailing Address
Email address
Use the following as a guide for your correspondence. Be sure to personalize the letter to the extent that you feel comfortable
with.
Dear [your United States or State representative]:
I am writing to you as a constituent of this great state of _______ and on behalf of the MHE Research Foundation a
non-profit-organization that is committed to finding a treatment and cure for this rare genetic bone condition known as Multiple
Hereditary Exostoses /
Multiple Osteochondroma's
MHE is a genetic bone disorder in which benign cartilage-capped bone tumors that grow outward from the metaphyses of long
bones, growth plates of long bones or from the surface of flat bones throughout the body.
These Exostoses / Osteochondroma's can cause numerous problems, including: compression of peripheral nerves or blood
vessels; irritation of tendons and muscles resulting in pain and loss of motion; skeletal deformity; short stature; limb length
discrepancy; chronic pain and fatigue; mobility issues; early onset arthritis; and an increased risk of developing chondro-
sarcoma, reported risk of 2%-5% over life time.
It is not uncommon for MHE / MO / HME patients to undergo numerous surgical procedures throughout their lives to remove
painful or deforming Exostoses / Osteochondroma's and or to correct limb length discrepancies and improve range of motion.
Surgery, physical therapy and pain management are currently the only options available to MHE / MO / HME patients, but their
success varies from patient to patient and many struggle with pain, fatigue and mobility problems throughout their lives.
In addition, MHE research will uncover discoveries that will has the potential to effect millions of lives, specifically those who
suffer more common bone related conditions such as arthritis, osteoporosis, other therapeutic applications including
inflammation, cancer, neuron degeneration and cardiovascular disorders.
Add support to your information by including your own personal story. Introduce yourself as either a person with MHE or as a
friend, family member or loved one of a person with MHE. Describe how MHE has negatively impacted your life and the life of
your loved one. If you choose to include this information, this section should be no more than a few paragraphs.
In closing, I am writing to ask for your support in securing funds for the MHE Research There are a number of laboratories
located in the US that are researching MHE.
Your support is imperative in order to raise public awareness of MHE, to improve the lives of those afflicted with MHE, and to
secure funding to further MHE research.
If you have any further questions or would like more information about how you can help the MHE cause, please feel free to
contact me at your convenience. For more information about MHE, please visit the MHE Research Foundation web site at
www.mheresearchfoundation.org
Sincerely,
(Your signature here)
Name
Mailing Address
Email address
 | Ask for a specific favorable commitment from your legislator in your note. |
| Express your thanks. Always be polite and thank your official for taking the time to read your letter. Let them know that | |
| any help that they can offer would be greatly appreciated. You can also state that you would be eager to hear about any suggestions that they could provide you. |
| Enclose a copy of the MHE information, fact sheet. |
| Make copies of everything. This will help keep you aware of what's been done and what still needs to be done. |
| Keep us informed of your successes. If you receive a legitimate response from an elected official, please let us know. |
| Sending copies of your original letter and your response to us by mail to the MHE Research Foundation |
| If you sent and/or received an electronic response, send a copy to sarahziegler@mheresearchfoundation.org | |
| You can copy / paste the sample letter into a word document and edit from there. |
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The MHE Research Foundation, we comply with the HONcode standard for health trust worthy information: By the Health On the Net Foundation. Click
here to verify.# HON Conduct 282463 and is linked on the NIH National Library of Medicine, Directory of Health Organizations (SIS) website, as well as
the link for Patient Information on The Diseases Database a cross-referenced index of human disease, and the Intute: health & life sciences a free
online service providing access to the very best Web resources for education and research located in the UK
here to verify.# HON Conduct 282463 and is linked on the NIH National Library of Medicine, Directory of Health Organizations (SIS) website, as well as
the link for Patient Information on The Diseases Database a cross-referenced index of human disease, and the Intute: health & life sciences a free
online service providing access to the very best Web resources for education and research located in the UK
The MHE Research Foundation is proud to be working with the EuroBoNeT consortium, a European Commission granted Network of Excellence for
studying the pathology and genetics of bone tumors.
studying the pathology and genetics of bone tumors.
| This website is regularly reviewed by members of the Scientific and Medical Advisory Board of the MHE Research Foundation. All online submission forms use (SSL 3.0, RC4 with 128 bit encryption (High); RSA with 1024 bit exchange) Protocol with Privacy protection. Our goal is to make this website as safe and user friendly as possible. |
| The MHE Research Foundation is a participating member organization of the United States Bone and Joint Decade, (USBJD) & the USBJD Rare Disease Patient Network |
| Email the webmaster: webmaster@mheresearchfoundation.org Materials on this website are protected by copyright Copyright © 2009 The MHE Research Foundation |
| This web page was updated last on 6/21/09, 4:0O pm Eastern time |
| Written consent must be obtained to attach web pages or the files attached to this website. Please email webmaster. |
Disclaimer: While many find the information useful, it is in no way a substitute for professional medical care. The information provided here is for educational
and informational purposes only. This website does not engage in the practice of medicine. In all cases we recommend that you consult your own physician
regarding any course of treatment or medicine.
and informational purposes only. This website does not engage in the practice of medicine. In all cases we recommend that you consult your own physician
regarding any course of treatment or medicine.
The MHE Research Foundation is proud to be an affiliate of the Society For Glycobiology
