The internet is a complicated place to explore. It has incredible and detailed information about these diseases.
Also limiting is the amount of information you receive from your medical professional.
The intent of this website is to provide simple explanations of the most commonly asked questions about Crohn's and HSTCL, as well as provide some lesser known, and somewhat surprising information and statistics.
From here our user may expand their knowledge through our links to detailed source information.
When it comes to the medical care of our loved ones, WE MUST BE OUR OWN ADVOCATE. Our family learned this first hand, with devastating results. We relied solely on doctor's advice, with limited, US-only based information, and too much trust in the system.
We did not have the information or knowledge necessary to challenge the norm.
It's a complicated world and sometimes the right information is not easily found or shared. This is why our goal is to raise awareness about Crohn's and HSCTL, the benefits AND the risks of the drugs prescribed and treatments offered in the US.
It's a big world out there and we have to learn to explore beyond US borders for medical help, especially if our life depends upon it.
There are medical break throughs happening all over the world, in the most unexpected places. Our goal is to introduce what is happening in the global arena regarding better treatments and cures for Crohn's and HSTCL, then may be found in the US.
We are researching all focused charitable organizations as well as medical research facilities to identify if they meet our mission's goals. We want to provide donations and grants to these specific organizations in the efforts to promote medical research for Crohn's and HSTCL.
When Tommy lost his battle after a grueling year of events, we took time out to grieve over his life. But we made it our mission to ensure that we did not display inaction toward the events of the past year. Now, with our new foundation, we hope that others will feel the same, and help contribute toward one or more of our many causes. One of Tommy's final wishes was that, "if nothing else, maybe we can save just one person, one family, from going through what we're going through". Now it's our duty to make sure we bring that wish to life.
The idea of making it through the perils of a storm is one that has been linked to our family for quite a long time. Ever since Tommy's passing, it has remained a constant theme in our efforts toward creating the foundation. Families across the globe find themselves "in the rain" each and every year when a loved one is diagnosed with a life-threatening illness. We want to do everything we can to ensure that all of those lives are afforded a fighting chance to make it through the storm.
Tommy began suffering from Crohn's disease at the age of 8 years old. This disease is notorious for not having any cure nor concrete treatments despite how often cases of it occur. The side effects from Tommy's Crohn's medicine led him to more sick over the years. This disease is thankfully becoming more recognized in modern medicine, so part of our mission is to use our resources to help raise awareness for Crohn's to further its research. Visit our page.
T-cell lymphomas are tumors of the T-cells, which are an integral part of the immune system. Although the research for this class of illnesses is further along than ever before, there is still much progress to be made regarding a cure and more successful treatment for T-Cell Lymphomas. We want our efforts to help ensure to its continued progression.
In addition, there's even less resources regarding cures and even treatment for those who are diagnosed with Hepatosplenic T-Cell Lymphoma (HSTCL), the disease that affected Tommy. Part of our mission now is to use our donation funds and event awareness to help the cause of researching this rare illness among other forms of lymphoma, and hopefully coming closer to a cure over time. Visit our page.
A bone marrow donation helped significantly in Tommy's fight. This made us aware to the importance, and lack of promotion, of bone marrow donations in not only the United States but in countries across the globe as well. Our foundation will be in support of Be the Match, an organization that funds and heavily promotes the Bone Marrow Registry. Visit our page.
This foundation is devoted to researching and providing information about Crohn's Disease and Hepatosplenic T-cell Lymphoma.
Our information comes from reputable medical sources found on the web. We substantiate this information against multiple sources to ensure it is as credible as possible. Our research is not limited to US based sources. We are searching the globe for answers which are not readily presented to us in the US.
We have no political or religious bias in the information we provide on this web-site. We are not medical professionals and offer no medical advice, except that the reader review the information provided, and our sources, so they can make an informed decision regarding their medical treatment and care.
To the right are some of the many sources we have used to date. This list is always expanding as we discover new sources of information.
Crohn's Disease Research:
Hepatosplenic T-Cell Lymphoma