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| Featured Survivor Isaac Braun
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Welcome to BMT E-News an online newsletter for people who have been touched by a bone marrow, stem cell or cord blood transplant. Regardless of whether you're new to transplantation or a seasoned veteran, you'll find interesting information in each and every issue.
This issue's featured survivor (above) is Cammy Lee. Cammy was transplanted in 1993 for acute lymphoblastic leukemia. After learning she needed a transplant, Cammy's close-knit Chinese family created the Cammy Lee Leukemia Foundation and began holding donor recruitment drives to find her a donor. At the same time, a little Canadian girl who needed a transplant had captured the hearts of Canadians, 10,000 of whom volunteered to be a marrow donor. One of them was a match for Cammy.
A year after transplant, Cammy's foundation was still going strong and became an official donor recruitment group for the National Marrow Donor Program (NMDP). Cammy now works as the recruitment manager, registering new donors to help minitority patients like her find a donor.
"My reward is to try and give others a second chance at life as my donor did for me," says Cammy.
Congratulations, Cammy, on 15 healthy, happy years since your transplant!
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| Researchers Test Treatment for Chronic GVHD of Mouth |
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 The National Institute of Nursing Research at the National Institutes of Health (NIH) is recruiting patients for a clinical trial testing the effects of topical thalidomide gel in patients who have developed mouth ulcers due to chronic graft-versus-host disease (cGVHD).
Chronic GVHD can affect the lining of the mouth and throat and is sometimes referred to as chronic GVHD-related oral mucositis or chronic GVHD-related stomatitis. Symptoms may include:
- painful ulcers in the mouth and throat
- redness and swelling of the lining of the mouth and throat
- dry mouth
- difficulty eating, drinking, swallowing and talking
- pain from spices, alcohol or flavoring (such as in mint toothpaste)
The study will be conducted in two parts. Half of the 66 patients who enroll in the first part of the trial will receive thalidomide gel to put on their mouth ulcers, four times daily for four weeks. The other half will receive placebo - an inactive gel - to put on their mouth ulcers, four times daily for four weeks. Neither the clinical trial staff nor the patients will know which gel the patient is assigned.
If the thalidomide gel is successful in healing and reducing the pain associated with GVHD mouth ulcers, the second part of the study to test the effectiveness of a thalidomide mouthwash for the same purpose will begin. Applying thalidomide as a gel directly to the mouth ulcer or as a mouthwash, rather than taking it as a pill, may reduce the amount of drug that enters the bloodstream and cause fewer side effects.
Patients between 18 and 80 years of age who have developed oral chronic GVHD may be eligible for this study. Participation by women in the first part of the study is restricted to those who are unable to have children due to surgical sterilization (either tubal ligation or hysterectomy), since thalidomide can be damaging to a fetus. Partcipants must be able to travel to the NIH in Bethesda, MD seven times over the course of an eight week period. The treatment provided through the study is free of charge. Air transportation for the patient and, if necessary, a caregiver, will be paid for by NIH.
If you would like additional information about this study contact Tara Cozzarelli, RN, BSN at 301-451-1683 or email cozzaret@mail.nih.gov. |
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| Conference to Discuss Transplant Options |
 Chicago-based Leukemia Research Foundation will host a one-day conference entitlted:
Bone Marrow, Stem Cell and Cord Blood Transplants:
Is one of these therapies right for you?
Saturday, March 15th, 8 am - 2:30 pm, at the Westin O'Hare in Rosemont, IL. Speakers will address the optimal time for transplant for patients with AML, CLL, non-Hodgkin's lymphoma, and ALL, as well as cord blood transplantation. For more information visit their web site or phone 847-424-0600.
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| SAVE THE DATE: Transplant Survivorship Symposium September 20-21 |
Celebrating a Second Chance at Life
A symposium for bone marrow, stem cell and cord blood transplant survivors and their loved ones
September 20-21, 2008
Dallas, Texas.
This two-day seminar, sponsored by BMT InfoNet and the National Marrow Donor Program, will feature leading experts on issues faced by adult and pediatric transplant survivors including:
- How to monitor and protect your health long-term
- Managing emotional and psychological challenges post-transplant
- Coping with fatigue
- Chronic graft-versus-host disease
- Learning and memory problems post-transplant
- Managing caregiver concerns
- Unique issues faced by young adult transplant survivors
- Growth and developmental challenges of pediatric survivors
- Insurance and employment concerns
- Sexuality and fertility post-transplant
The symposium will include presentations, workshops and plenty of networking opportunities for survivors, their caregivers and other family members. If you are an adult survivor, a caregiver of a survivor or a parent of a pediatric survivor, you won't want to miss this event. Email jo@bmtinfonet.org if you would like to be contacted when registration opens. Don't miss this unique opportunity to learn and share you wisdom with other transplant survivors, caregivers and parents.
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| Patients Seek Help from Survivors |
BMT InfoNet's Caring Connections Program is seeking a transplant survivor who meets the following criteria, and who would be willing to talk with a patient who is considering a transplant:
- a young adult with a diagnosis of congenital dyserythropoietic anemia or thalassemia who has undergone a bone marrow, blood stem cell or cord blood transplant
- a person who was in their mid-30's when they had an unrelated donor or cord blood transplant for non-Hodgkin's lymphoma
If you meet one of these criteria and would be willing to talk with these patients, please email jody@bmtinfonet.org. If you are not already part of BMT InfoNet's Caring Connections program, click hereto join.
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| Abbott Molecular Awarded BMT InfoNet Caring Partner Award |
 BMT InfoNet has awarded Abbott Molecular, based in Des Plaines IL, with its first ever Caring Corporate Partner Award. Presented to Howard Rood, Manager of Global Marketing for Abbott's HLA Franchise, the award honors Abbott's commitment to recruiting minority donors and helping to educate patients in need of a transplant. The award took place at a donor-recipient reunion, sponsored by Abbott Molecular and the National Marrow Donor Program. Abbott employee, Gus Reyes volunteered to be a marrow donor at a drive sponsored by Abbott last year. Within weeks, he was told he was a match for 8-year old Selena Garza of Texas, who had been diagnosed with leukemia. "Abbott's leadership in aggressively recruiting minority donors so that more patients can receive a transplant are commendable," said BMT InfoNet Executive Director Susan Stewart. "Already one life has been saved. We hope that Abbott's efforts will generate many more miracles like little Selena's."
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| Calendar Celebrates Transplant Survivors |
 Celebrate transplant survivorship with BMT InfoNet's beautiful 2008 Celebrating Life wall calendar. Each month features a full page photo and essay about a bone marrow, stem cell or cord blood transplant survivor. It's sure to inspire hope and joy throughout the year, while raising money for a good cause.
Order yours today and support the work of BMT InfoNet. Order online or phone at 888-597-7674. Calendars are $12.00 each.
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| Light Up the Winter Months With This Beautiful Glass Sun Catcher |
 BMT survivor, Jim Egan, has designed a lovely glass suncatcher to capture the beauty of the orchids that grow in his home state of Hawaii. Utilizing laser technology and color stable pigments, the art is imaged onto film, laminated between glass and leaded.
Jim has donated a limited supply of these original works of art to BMT InfoNet. All proceeds from the sale of the suncatchers will support vital services to transplant patients and survivors. Each suncatcher measures 2 X 2.5 inches, and hangs from a delicate chain. $10.00 each plus shipping and handling. Order your suncatcher while supplies last! |
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