KT Fundraising

In a recent email someone inquired about where the money raised would go. First let me start off by explaining the need for fundraisers. KT Syndrome is a very rare disease. In fact it is so rare that many Doctors have not even heard of it. Most of the ones that have heard of it have never encountered a patient with KT Syndrome. So this leads parents on a search for an answer. Sometimes patients see several Doctors before they are even diagnosed. This cost thousands of dallors. Just to give you an idea, the trip we just made to Boston for my daughters procedure cost over two thousand dallors. That is only the travel expense, not the fees for the procedure. We are to make this trip again in six to eight short weeks. Unfortunatley, most parents and patients cannot afford these fees so they are left going to Doctors who do not have the experience and knowledge to care for patients with KT Syndrome.

After giving it alot of thought and doing some research I feel very strongly that the money is needed for patients to have help with travel expense. Not only travel expense but research as well. It is my hope that maybe someday the miracle will be found for KT Syndrome.   It is a very tough battle to fight.  Not two patients are alike.  But pain seems to be an ailment that affects most people with KT.  Pain, bleeding, risk of cellulitis, blood clots, and the limb that is affected being very large, are just some of the things a patient with KT Syndrome can expect.  I am working so very hard to help and make a difference.

I have decided that a portion of the proceeds from my first DVD will go to The KT Foundation. The website is www.ktfoundation.org They have funds that go directly for traveling expense as well as towards research. I spoke with the founder for quite some time and feel very confident that this is where the money shall go. I will also be working hard to put togeather car washes, bake sales and other fundraisers throughout the year to raise additional money for the KT Foundation as well as for the KT support group at www.k-t.org. They are a support group for KT patients as well as family members of KT patients. Please check out both of their websites. They are both filled with great information. You can go to my link page for a direct connection.

Remember, it only takes one person to change the world!  I am going to work my butt off to make my dreams happen! Please visit my site often and watch for that DVD! It is in the works.  Thanks again for all of your support!