A letter from Dr Hamilton Brigham and Womans Research
I wanted to add this post to Erica’s Walk for a Cure website to highlight the importance of donations from all of you in the name of scientific and medical research. As you know, we have spent the last several years trying to characterize the symptoms, physical exam, and laboratory findings of those who suffer from mast cell disorders including mast cell activation syndrome. We are building a database of patients which includes clinical information as well as specimens which can be available for study. We are moving to the next phase which includes the scientific study of what may cause mast cell activation and why people might get this disorder. We believe that we have to learn more about mast cell activation before we can more readily diagnose and treat it.
Medical research can be very time and labor intensive. People have to be paid salaries to do this work and the materials and supplies to carry out the research are expensive. The majority of this work is happening at large academic, research medical centers such as Brigham and Women’s Hospital. Unfortunately, the Institution itself is not in a position to provide the necessary money towards this research in the form of salary or supplies. Salaries are generated through clinical work (seeing patients in clinic or performing procedures) or through grants. Traditionally, the medical research community has relied on government support (e.g. NIH) to make research financially possible. With our current financial crisis in the government, funds have been stagnant for research and are at risk for further shrinking. I have personally seen labs significantly downsize as the funds are simply not there to continue the work. Therefore, it is even more critical in 2013 and future years to support medical research and discovery through private donations from people like you.
Financial gifts such as those to Erica’s Walk for the Cure go directly to the research and are not used for any other purpose. You can be assured that your gift will have direct impact on discoveries that will ultimately improve the health of those who suffer from mast cell disorders. I, on behalf of Brigham and Women’s Hospital and all who research mast cell disorders, truly appreciate your time and support which allows us to get the job done and search for a cure!!
-Matthew J. Hamilton M.D.
Brigham and Women’s Hospital
Mast Cell Center of Excellence
All of us at Ericas Walk for a Cure want to first thank you all for supporting our fund raising efforts over the last three years. We hope to continue and grow in New England and help support our cause and all our fellow Masto community as we continue our efforts in raising education and research for a cure. In 2013 our goals and fund raising efforts are going to be driven higher, harder and with special purpose. We are focusing all our attention in 2013 on research at Brigham and Womans Hospital in Boston Ma. Due to funds being low in the research area and the need of funds Ericas Walk for a Cure will be donating 100% of its collections to the Dr Matthew Hamilton Research Fund at Brigham and Womans Hospital in 2013. So I am asking everyone to please come on board and help as much as possible this year and help build the needed research funds back so we can continue searching for a cure for Mast Cell Disease.
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Dustin Kees of Hampton NH the big winner of the 2012 Jet Blue Get-A-Way Raffle. All of us at Ericas Walk for a Cure could not be happier with this win !!! For you see Dustin is just recently home from a 1 year tour of duty in Afghanistan with the U.S. Marine Corp. Now Dustin will be able to take a dream vacation he so very well deserves.
I want to thank you all for joining me at my 3rd annual walk for a cure. This is truly amazing I could not have done it with out each and every one of you. For those of you that are new to us this year let me give you just a quick back ground. My name is Tom Flynn I started this fundraising effort 3 years ago with no idea where I wanted it to go and how fast it was going to take off. All’s I knew was after nine years of constantly being sick, going to doctor’s, going through testing, in pain, not be able to shower without tearing the skin off my body and getting the same diagnoses “we don’t see anything wrong, it must be in severe depression” and yet some test come back abnormal and that they could never explain it. All they keep saying is depression is a powerful thing. One day after collapsing at work and spending the next five days in the hospital, they tell me, my liver function is very high, my blood toxins are high, my white cells are high but they don’t know why so they are sending me home and follow up with my primary care. My wife and I talked and decided it was time I finally go to Brigham and Womans hospital in Boston to see one of the top liver doctors because my liver function test kept coming back high and that’s when my life was changed.
Sitting in on that appointment with the specialist was another doctor, Dr Matthew Hamilton a man who without knowing it would ultimately change my life. During the exam for my liver Dr Hamilton listened to me explain about everything that I have been thru over the last nine years. When I was done Dr Hamilton asked me some questions, then he did his own exam at which time he took his finger and scratched down the front of my chest. By doing this he left a line’s on my chest that lasted for more than a couple of hours. Dr Hamilton then asked if I would mind if he ran some test and explained he thought its was possible I have a disease called Mastocytosis. So there I was nine years later with a good ear, a scratch on the chest but never the less I was diagnosed with a life threatening and debilitating disease called Mast Cell Activation Disorder a form of Mastocytosis for which he told me there is no cure. After absorbing this and reading everything I could about this disease I realized how rare and how unheard of this disease was and it was at that moment when I decided to do what I am doing today.
I decided I needed to help raise funds for research at Brigham and Woman’s Hospital to find that cure. But more importantly to help be the voice of Masto, to help stop the current average of 9 to 10 years it takes to get diagnosed. To help other patients as they struggle with the sudden and dramatic life change that comes with Masto. To try and stop kids and infants from suffering in the pain that Masto brings every day. As adults we learn to tolerate some of the things Masto throws our way. But kids don’t have that voice, that strength, that ability to just turn things off and say I have to push on, they can’t choice to put that fake smile on and face the day that they have to face.
Thanks to the very special and caring team of doctors and researchers we have at Brigham and Womans we are very fortunate in New England we have some of the best in world right here at our finger tips. But sad to say that still isn’t enough, that still isn’t getting it done. We still can’t get the word out fast enough. We still can’t get doctors to understand that Masto is real. I just switched my primary care doctor after 20 years because he still couldn’t even pronounce Mastocytosis. He will still refer to it as “your illness”. He still believed that I suffered from his original diagnosis of depression. Emergency rooms everywhere still do not know how to treat a Masto patient when they are in full blown flare up. Too many doctors to date still have never heard of Mastocytosis and the effects it has on a patient. But thanks to each and every one of you here today you are helping us take one step closer to teaching them, one step closer to helping a Masto kid live a normal life, one step closer to reaching our dream of someday a cure and if not a cure than the drugs that will assist us in better living day to day. A Masto patient never knows what each day will bring. Every day is different than the day before and will be different than tomorrow. But one thing is a given if we don’t look out for ourselves, if we don’t protect ourselves from what causes our flare ups, everyday will be a bad day. The only down fall is our triggers can change every day so keeping up on our triggers is a task in its own.
Thanks to every one of you this year alone Ericas Walk was able to assist Jackson Doyon a little boy in North Carolina who desperately needed to be med flighted to Washington for medical treatment that he couldn’t receive in his area. Because of your generous donations Jackson has responded 100% to the treatment he received and has been able to go outside unprotected from the sun and play which he was unable to do since birth. Thanks to Elite Fitness and Karate Studios in Reading Mass and their fundraising efforts along with your donations we were able to assist in sending Erica to California for much needed experimental treatment. Erica just like Jackson so far has responded incredibly showing remarkable changes in her day to day functions. So these two kids alone show we are making a difference, together we will get the word out and together we will continue to reach our goal.
Having Masto isn’t all bad; there are some good things that came out of it. For me I don’t have to do as much yard work anymore because I can’t be in the sun to long periods of time sun has become a trigger for me. I don’t have to go to the mall anymore because I can’t be around the scents anymore. I am finally on a strict diet because I can’t eat just about anything I use to like anymore because of spices. But most important I have met some of the best people in the world I could have wanted to meet. Since being diagnosed I have met so many fellow Mastomites that have become family to me. You form a caring bound stronger than no other; you find that if you go more than two days without hearing from them you are in a panic until you reach them. You form this bound with people that you have never and probably will never meet face to face. That is the one power of Mastocytosis that I am in total awe over and that is the caring, concerning, bounding, laughing, crying, friendship that comes with it. When you are first diagnosed there is never a time in your life you feel more alone until you meet the other Mastomites and then you find out you will never be alone again because they are always beside you every step of the way. So once again let me thank you all from the bottom of my heart for supporting me, my family, Ericas Walk for a Cure and every patient suffering from Mast Cell Disease and I hope you all truly realize after today how much of a difference you have made.
This about a beautiful little girl Stephanie. People ask me why I do what I do. This is why I ask you all to walk beside me in November. Because there is hope, because there is a chance for these kids, because it is up to us to make it happen,
Mastocytosis can strike anyone, at any age, at anytime !
Click on Stephanies picture to see her story
Abstract Mast cell activation disease comprises disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells' mediators, affecting functions in potentially every organ system, often without causing abnormalities in routine laboratory or radiologic testing. In most cases of mast cell activation disease, diagnosis is possible by relatively non-invasive investigation. Effective therapy often consists simply of antihistamines and mast cell membrane-stabilising compounds supplemented with medications targeted at specific symptoms and complications. Mast cell activation disease is now appreciated to likely be considerably prevalent and thus should be considered routinely in the differential diagnosis of patients with chronic multisystem polymorbidity or patients in whom a definitively diagnosed major illness does not well account for the entirety of the patient's presentation.
Dr Matthew Hamilton Dr.Norton Greenberger
Dr Theoharis Theoharides Dr. Mariana C. Castells
BRIGHAM AND WOMENs HOSPITAL 75 FRANCIS st. BOSTON, MA. 02115
(617)732-5500 TTY/TTD (617)732-6458
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No one can understand what it is like to live with an incurable disease, except for the people living with it. Those with mastocytosis and other mast cell diseases live with life threatening and debilitating diseases everyday. Controlling their symptoms is very challenging. Very little is known about mastocytosis/mast cell diseases, and that is why I need your help to raise money to find a cure.
Ericas Walk for a Cure is a non-profit organization dedicated to helping patients, and health care professionals understand mast cell disorders. what they are and the impact they have on patients lives. The organization donations supports patients affected by mastocytosis/mast cell activation disorders, as well as their families, caregivers, and physicians, through research and education. Everyone involved in this organization volunteers their time because either they themselves have mastocytosis/mast cell disease or someone close to them does. With your help Ericas Walk for a Cure has raised over $44,000.00 towards research, education and assisted two families in need of medical assistance with Masto related treatment. So please continue to join us in or fight for a cure.
Ericas Walk for a Cure