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. |
| |||||||||||||||||||||||||
This website is regularly reviewed by members of the Scientific and Medical Advisory Board of the MHE Research Foundation.
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.
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.
Written consent must be obtained to attach web pages or the files attached to this website. Please email webmaster.
This web page was updated last on 2/20/08, 4:00 pm Eastern time
| Email the webmaster: webmaster@mheresearchfoundation.org Materials on this website are protected by copyright Copyright © 2008 The MHE Research Foundation |
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
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
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.
granted Network of Excellence for studying the pathology and genetics of bone tumors.
