The Mycosis Fungoides Foundation originated from one feeling -- frustration.
When Judy Jones was diagnosed with cutaneous T-cell lymphoma (CTCL) in 1990, she went from feeling that her world was falling apart to learning to live with the disease. Her search for information to help her with this journey turned quickly to frustration -- she had never heard of CTCL, knew no one else with CTCL, and could find no information. Judy wondered how other people were coping with a disease about which they knew nothing. In 1996, she created and went on-line with the CTCL information/support listserv. The listserv grew fast as the word got out, as the Internet increased in size and people became computer literate.
Meanwhile, Judith Shea's husband, Lee Allen Cohen, was diagnosed with Sézary syndrome in 1994 and passed away in 1996. Once again frustration abounded. Frustrated by the lack of information and support during her husband's illness, Judith created the Lee Allen Cohen Fund in his memory. Her goal was to find a way to use this legacy to provide information and support to others with CTCL diseases. Mr. Cohen's physician was Dr. Stuart Lessin, a dermatologist treating CTCL patients in Philadelphia, and Judith met with him several times to discuss ways to reach her goal.
In 1999 Dr. Lessin was also frustrated. He felt that a patient advocacy group could call attention to the needs for education and research in this field. After receiving information about the on-line CTCL information/support listserv from one of his patients, he called Judy Jones and suggested that she consider starting a foundation. Remembering Judith's goals, he also called her to discuss the idea of a foundation for MF patients. Dr. Lessin then suggested that the two "Judys" talk and consider attending the upcoming American Academy of Dermatology (AAD) meeting to assess the support of other physicians. During the AAD meeting, they met with the International Society of Cutaneous Lymphoma (ISCL) and other patient advocacy groups and determined that yes -- this foundation was needed.
Using the funds from the Lee Allen Cohen memorial as seed money, a foundation was created. Frustration found its purpose: The Mycosis Fungoides Foundation.
Our first newsletter focuses on who we are, and our history, mission and goals. Future issues will focus on information regarding treatment options and topics of interest to patients and physicians. Our goal is to provide information. Because this is a rare disease surrounded by many unanswered questions, we anticipate differing opinions. We hope to present objective information so that patients and physicians will be able to discuss individual cases and make informed decisions about treatment options. There is not "one best way" to treat this disease, and it is important for patients to rely on their personal physician's expertise. It is also important to understand what other physicians are prescribing so patients will understand the range of available options.
by Judy Jones, President, Mycosis Fungoides Foundation
Here it is ... the first newsletter of the Mycosis Fungoides Foundation.
With gentle pushing, prodding and never-ending "to do" lists, Judith Shea has partnered with me to establish a solid base on which to build a viable, stable organization. Visioning and strategic planning have been our focus this year -- expanding possibilities, deciding where the foundation needs to go, seeing a clear direction, and determining what is standing in the way.
I see this stage of our evolution as an opportunity to reflect on what is and is not working, to determine where we want to go, and to see who wants to join us on our journey. The foundation incorporates cutaneous T-cell lymphomas (mycosis fungoides and Sézary syndrome are the most common) as well as other related diseases. This issue highlights one of these related diseases -- lymphomatoid papulosis.
I encourage you to read about the volunteer opportunities available and identify your areas of interest. I would like to match each member's areas of expertise with volunteer tasks that will help the Mycosis Fungoides Foundation benefit patients and their families. Those of us who have been diagnosed with a disease that is out of our control can control how we choose to deal with it. Becoming involved is one way. I felt that I was powerless when I was first diagnosed and I chose to isolate myself. It was only when I chose to reach out to others that my isolation ended and my sense of control returned.
I am energized and optimistic about the future. Our organization rests with people that have a passion to accomplish our goals and meet the needs of patients and physicians. Now that we have a voice, I encourage you to join together to accomplish our objectives and secure the future of the Mycosis Fungoides Foundation.
by Stuart R. Lessin, M.D. Director of Dermatology, Fox Chase Cancer Center, Philadelphia, PA
In 1806, when the first case of mycosis fungoides was observed and described in the medical literature, little was known about this form of cutaneous T-cell lymphoma (CTCL). It was not until the 1970s that physicians and scientists began to understand the cancerous origins and features of mycosis fungoides. Indeed, during this time, the term "CTCL" was introduced to encompass the diseases of mycosis fungoides and Sézary syndrome. This resulted from our understanding of the similarities between these two forms of cutaneous T-cell lymphoma. The growth of our knowledge of CTCL, like its patients, has suffered, in large part due to CTCL's relatively low incidence. As an "orphan disease," there has never been the level of resources available to CTCL patients, in contrast to other lymphomas and cancers.
Despite the seemingly slow progress, there have been exciting advancements over the last 10 to 15 years. Advances in therapy, in particular, have led the way. New biologic response modifiers, such as photopheresis and Interferon-alfa, demonstrated significant activity in CTCL and have prolonged survival in advanced cases. Most recently, two new therapies have been approved by the Food and Drug Administration for the treatment of early stage (Targretin® gel), intermediate and advanced stage (Targretin® capsules), and late stage (ONTAK®) CTCL. These products not only provide new therapies for CTCL patients, they also demonstrate a new level of commitment from the pharmaceutical industry to develop new therapeutic agents for CTCL.
With the recent cloning of the human genome and an unprecedented increase in the annual budget of the National Institutes of Health (NIH), the capacity of biomedical investigators to advance our knowledge of CTCL has never been greater. Along with this unprecedented convergence of resources, there has been the organization of CTCL patients into support groups. These support groups have filled a critical need of uniting CTCL patients and providing them with basic, but hard to find, information about their disease. Now, from these support groups, emerges a patient advocacy group, the Mycosis Fungoides Foundation.
The role of patient advocacy groups cannot be overstated. The power of patients and their families can transform nations' attitudes and commitment to human diseases. The Mycosis Fungoides Foundation is in an unprecedented position to play a leadership role in organizing and expanding government, academic, health services and industry resources for CTCL. For too long, CTCL patients have not had an effective voice in the halls of Congress and the NIH. Now, the Mycosis Fungoides Foundation officers are meeting annually with members of Congress and officials of the NIH. For years, academic medical centers struggled to sustain inter- institutional collaborations regarding CTCL studies. Pharmaceutical companies hesitated to test products in CTCL due to real and imagined obstacles in identifying significant numbers of CTCL patients. The Mycosis Fungoides Foundation is in the process of reversing these trends and providing a national and international identity to the thousands of CTCL patients through initiatives in education, communication, and research.
There is great excitement among physicians, nurses, and researchers who are involved in CTCL about the establishment of the Mycosis Fungoides Foundation. Among them, their opinions are unanimous -- that a CTCL patient advocacy group has been long overdue and fulfills a great purpose. I urge all of you to support the Mycosis Fungoides Foundation and strengthen its voice and leadership in improving the lives of CTCL patients.
"How will a small, disease-specific organization be able to make a difference?" One of the answers is collaboration. Working together with related groups, we can share information and work toward common causes. Mycosis Fungoides Foundation can be the clearinghouse for accurate information on CTCL and provide this to other medical and patient organizations. They can include us in their educational materials and programs. We can work with larger disease specific organizations that have a T-cell component (National Psoriasis Foundation, National Alopecia Areata Foundation, etc.) to support research and other issues we have in common.
We have strong support from the medical community and have established an outstanding Medical Advisory Board. The medical community recognizes the value of a patient advocacy group.
A strong board of directors will keep us focused and on task. We have also put out a call for applications to our board of directors. At this time, we have commitments from Richard L. Edelson, M.D., from Yale University School of Medicine as our medical representative and Michael W. Young from Ligand Pharmaceuticals as our industry representative. If you have interest in applying for a position on our board, there is additional information on our website: www.MFFoundation.org or call: 248-644-9014.
The Mycosis Fungoides Foundation display at the American Academy of Dermatology Annual Meeting.
Judy Jones and Judith Shea accepting an unrestricted educational grant from Michael Young of Ligand Pharmaceuticals.
The Mycosis Fungoides Foundation would like to congratulate the Lymphoma Research Foundation of America (LRFA) and the Cure for Lymphoma Foundation (CLF) on their recent merger. The new organization will be known as the Lymphoma Research Foundation (LRF). This makes them the only national organization dedicated specifically to lymphoma. With the merger, they will be able to eliminate duplicate administrative and program costs that will result in increased spending on lymphoma research.
LRF will maintain offices in Los Angeles and New York. Donna Shu, the L.A. Executive Director, will have responsibility for all patient and professional information, education and support programs. Suzanne Bliss, the N.Y. Executive Director, will have responsibility for funding, advocacy and their scientific research grant program.
The Mycosis Fungoides Foundation looks forward to working with the LRF to provide educational opportunities and funding for research that will lead to cures for lymphoma in general and cutaneous T-cell lymphoma specifically.
For more information about this dynamic new organization, visit their website at http://www.lymphoma.org or contact:
Lymphoma Research Foundation
8800 Venice Boulevard, Suite 207
Los Angeles, CA 90034
Volunteers are the backbone of our organization. This is your personal invitation to get involved. You don't have to have any special talents or large amounts of time. Many of our projects can be done when you're online, such as reviewing a medical journal to check for articles that would be of interest to patients. If you have a particular talent, just let us know what you like to do and we'll find a spot for you.
If you're thinking there is nothing you can do, start dreaming...expand your vision of what you think you can do. Someone who barely knew how to turn on the computer started the CTCL-MF on-line support listserv. Think about what you would like to see accomplished. Below are some volunteer opportunities we've identified. Let us know what you come up with.
• Write a grant
• Research funding opportunities
• Monitor an online medical journal
• Write a newsletter article
• Solicit articles from your physician
• Provide technical help:
• Website consultation
• Database software expertise
• Computer systems consultant
• Help with special projects:
• LyP patient pamphlet
• PUVA Resource Directory (Thanks to Doreen Hudson for directing this project)
The Mycosis Fungoides Foundation would like to recognize these volunteers who found a job for themselves:
Boulden Griffith has been the Mycosis Fungoides Foundation unofficial welcome person for Sézary patients since he joined the CTCL-MF on-line support/information listserv in 1997.
Tom Andrews of Maryland and Claudia Day of Virginia came to the American Academy of Dermatology meeting in Washington, D.C. in March and monitored the Mycosis Fungoides Foundation exhibit. By staffing the booth, Judith Shea and Judy Jones had time to attend meetings, while Tom and Claudia gave physicians a patient's perspective of the disease.
Noal Cohen has been a member since the beginning of the CTCL-MF listserv in 1996. He attended a CTCL meeting co-sponsored by the New York Academy of Sciences and Yale University School of Medicine, summarizing the proceedings for the CTCL-MF listserv.
Marcia and Rich Houchens took on the job of copying and sending out a booklet of journal articles when there was little information regarding CTCL-MF available to patients. They sent information packages to hundreds of patients. They gave up their "job" this year because there is more up-to-date information
Tom Crabtree has been a list member since 1997. He has done a tremendous amount of research and has been a valuable resource person. He has recently moved to the state of Washington and maintains a web site, http://tomsmfctclpage.homestead.com/index.html, with lots of CTCL information and links.
Where do you fit in? Let us know. Contact: Mycosis Fungoides Foundation at www.mffoundation.org, or call (248) 644-9014.
Join MFF: donate or volunteer.
CTCL-MF On-line Patient Support/Information Listserv
The CTCL-MF on-line patient support/information listserv was started in 1996 as a vehicle for patients, friends and families to share their experiences and information about mycosis fungoides, Sézary syndrome and other related diseases. There are now more than 750 members from 20 different countries who participate. If you want more information about this listserv, please contact us.
Directions to join the listserv:
• E-mail: listserv@listserv.ACOR.org
• Leave subject area blank
• In message area, type: subscribe CTCL-MF type your name
The CTCL-MF list is one of over 100 cancer support listservs sponsored by the Association of Cancer Online Resources (ACOR). Information on other cancer related listservs may be found at: http://www.acor.org.
PUVA Resource Directory: Doreen Hudson has undertaken the project of putting together a directory of PUVA providers. This will help patients identify a physician or facility close to home for their treatments.
Lymphomatoid Papulosis Pamphlet: Nikki Thomason has been the guiding force behind the Mycosis Fungoides Foundation's effort to publish a Q&A pamphlet for patients. Any contributions designated LyP are tax-deductible and will be used specifically for this project.
Mycosis Fungoides Foundation Represented in CARRA Program
The National Cancer Institute (NCI) created the Consumer Advocates in Research and Related Activities (CARRA) program to encourage people affected by cancer to provide their viewpoint and ideas directly to NCI staff to enable the NCI to incorporate this perspective into its programs and activities. They have selected 150 consumer advocates that represent a variety of cancer types, age groups and ethnic groups from across the nation. Judy Jones of the Mycosis Fungoides Foundation was appointed as a founding CARRA member for a three-year term that began in September. In addition to participating in NCI activities, CARRA members will represent the opinions of their groups and play critical roles as two-way information links between their own communities and constituencies and the NCI.
Mycosis Fungoides Fast Facts
The Mycosis Fungoides Foundation has a pamphlet available, "Mycosis Fungoides Fast Facts." This is a non- clinical pamphlet that answers some basic patient questions. A copy is available on our website at: www.MFFoundation.org. If you would like a copy sent to you, please contact us. These are also available for physicians to give to patients who are first diagnosed with this disease.
The Mycosis Fungoides Foundation is a member of the Coalition of Patient Advocates for Skin Disease Research (CPA-SDR), a coalition of national skin organizations representing individuals with skin disorders throughout the United States and the world. These organizations are dedicated to patient education, support, research, and promoting public awareness.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is a component of the National Institutes of Health (NIH). The NIAMS Coalition is composed of over 55 voluntary and professional associations concerned with their programs. Each year, CPA-SRA joins with The Society for Investigative Dermatology (SID) and NIAMS at congressional budget time to advocate for appropriate funding levels for research. The goal is to increase the NIH budget by 100% over a five-year period ending in 2002. Working as a team, appointments are made to contact representatives from coalition members' home states and key budget committee members to discuss the need for additional funding for NIH projects. Teams consisting of both physician and patient advocates made over 60 visits to congressional offices.
As a constituent, you can help too. Write your senators and representatives and ask them to support NIH funding for research. Your legislators listen to you. Your local representatives and senators addresses can be found by searching under your ZIP code on the Internet at: www.visi.com/congress/.
In a time when the national budget is overburdened with many requests for funding, it is especially important that we continue to thank the legislators who are working on our behalf in Washington and encourage their continued support of research and health issues.
More information on NIAMS can be found at: http://www.niams.nih.gov.
Senator Edward Kennedy, NIAMS Director Dr. Stephen Katz, and Dr. Thomas Kupper, SID member and Mycosis Fungoides Foundation Medical Advisory Board member, at NIAMS Day.
Members of the CPA-SDR with Senator Kennedy at NIAMS Day.
Nikki Thomason, founder of the Cheetah Club
How a handful of patients could hold the key to a cure for cancer
Patients with a rare skin disease called lymphomatoid papulosis, also known as "LyP," call themselves "the spotted ones." In layman's terms, LyP is a lymphatic system disorder that manifests itself in self-healing nodules and papules ("bumps" and "spots") that come and go spontaneously.
What's unique about LyP and what has been baffling doctors and patients for years is its extraordinary ability to inexplicably turn itself off, and then turn itself back on again. It looks like cancer and can act like cancer, but frequently and for no reason, it suddenly disappears of its own accord for weeks or months at a time before reactivating. The lesions vary in shape and size. They can be small, round, shiny and smooth, or large, crusty open wounds. Some leave scars that are flat, pinkish red, brown or purple; others leave keloid scars that are flesh-colored, red or pink and may be nodular or ridged; and some, if left alone, don't leave scars at all. The number of lesions can vary from a single flare up to eruptions numbering hundreds. They can come and go for decades.
The disease is so rare that the chances of developing it are practically one in a million -- the overall prevalence rate is estimated at 1.2 to 1.9 cases per 100,000 population -- but 10 to 20 percent of cases can turn out to be precursors for more serious conditions, including mycosis fungoides, Hodgkin's disease, cutaneous T-cell lymphoma and anaplastic large cell lymphoma.
Statistically, there should be only about 5,000 "spotted ones" worldwide. Yet so far, only a few hundred have found each other through The Cheetah Club, started by San Francisco Bay Area resident Nikki Thomason, who, after two years of breakouts, was finally diagnosed in March 1998 at the age of 40. Thomason says the name "Cheetah Club" came to her while watching the Discovery Channel. "The narrator was saying 'cheetah' was the Hindi word for the spotted one," she recalls. "I thought it was the perfect name."
The Cheetah Club runs an AOL chat room, which allows those list members who are on America Online to share experiences and spread awareness of the disease. And awareness is what LyP sufferers desperately need in the search for answers.
In fact, in some scientific circles, LyP still hasn't been fully embraced. The American Cancer Society does not classify LyP as a cancer, but it has been acknowledged as such in Europe. In 1997, the European Organization for Research and Treatment of Cancer (EORTC) formally recognized LyP as a lymphoma.
At this time, LyP is not thought to be hereditary, but there is no known cure. Most doctors begin by treating their patients with a topical steroid cream, such as Diprolene®. If the steroid creams to not prevent the development of new lesions (which is true in most cases), the next line of treatment is Psoralen® combined with exposure to ultraviolet light (PUVA) or low oral doses of methotrexate (MTX). MTX doses need to be kept very low (usually up to 15mg weekly) to avoid liver toxicities.
LyP has only been studied in-depth since 1968, so it's still relatively unknown. One of its champions, however, is Dr. Marshall Kadin -- a Harvard professor who's been the torchbearer for LyP for a decade. As well as juggling two jobs -- associate professor of pathology at Harvard Medical School and associate director of the skin cancer program at Boston's Beth Israel Deaconess Medical Center -- Kadin has also recently returned from a successful sabbatical at the Institute of Dermatology in Zurich, Switzerland, where he was conducting further LyP research. Early results are promising. "LyP is an important clue to the [workings] of lymphoma," he said. "The major breakthroughs in cancer will not come from altering chemotherapy regimens, but instead from understanding basic mechanisms of disease development."
Kadin accepts that the debate over the possible link between non-Hodgkin's and LyP is a controversial one, but he believes it deserves further investigation. "A genetic basis for LyP shouldn't be entirely excluded, either," he said. "No one understands it at the present." Since some LyP patients do die from related lymphomas, Kadin is determined to find the connection, if there is one.
Back on the West Coast, meanwhile, patients such as Thomason and her fellow Cheetah Club members are thrilled with the possibility that their rare disease could one day provide the key to a cure for cancer. "What if they do find a cure for cancer because of it?" says 23-year-old Julie Berruto, as she imagines the headline. "'LyP saves the world' -- wouldn't that be awesome?"
The Society for Investigative Dermatology (SID), dermatology's largest research organization, held its 62nd Annual Meeting in Washington, D.C., May 9-12, 2001. A number of the 975 abstracts submitted presented information related to cutaneous T-cell lymphoma (CTCL), and in particular, CTCL treatments.
Investigators presented preliminary data on therapeutic mechanisms of Photopheresis. One study evaluated narrow band UVB phototherapy in early stage mycosis fungoides, showing that it appears to be therapeutically useful and may have fewer side effects than broadband UVB phototherapy.
German investigators presented an abstract reporting preliminary results of a small vaccine study in CTCL patients. Partial tumor regression was seen in a few patients that were vaccinated with tumor specific T-cell receptor peptides. The peptides, representing portions of the protein sequence of the T-cell receptor expressed on cancerous T-cells, were synthesized after labor-intensive identification processes. While this approach offers a unique way to stimulate the immune system against CTCL cells, it still remains a very experimental approach.
Other investigators evaluated the use of bexarotene (Targretin®) in combination with other forms of therapy, including Interferon, PUVA phototherapy, Photopheresis and ONTAK®. These early studies demonstrate that higher response rates may be achieved when combination therapy is utilized. Further clinical investigation is necessary to determine the optimal combinations for the different stages of cutaneous T-cell lymphoma.
Overall, the studies represent encouraging progress over the last year with regard to our understanding and development of new therapies for CTCL.
Dr. Sam Hwang of the National Cancer Institute with his research at the SID meeting.
The Mycosis Fungoides Forum will feature more information about clinical trials in future issues. Clinical trials are studies to determine whether a medication is safe to use and effective in a particular disease. There are specific guidelines as to who may and who may not participate according to the protocol of the study. Additional information about these three trials can be obtained on the Internet at: http://www.centerwatch.com or from the contact persons listed. The first two trials will be offered at additional sites. Watch for this information to be posted on CenterWatch.
Data obtained from clinical trials provides information for physicians to determine more effective ways to treat patients. Results of research may also help get new drugs approved by the Federal Drug Administration (FDA) and provide additional treatment options for patients. Clinical trials contribute to knowledge and progress in our mission to find better treatments. If you are interested in the possibility of participating in a clinical trial, discuss this with your physician.
Trial Summary: A study for patients who have stage IB -- IIA cutaneous T-cell lymphoma (CTCL)
This is an open-label, dose-randomized study of Targretin® capsules (patients will receive one of two doses of Targretin®) in combination with PUVA therapy in patients with stage IB - IIA cutaneous T-cell lymphoma. Both Targretin® and PUVA therapy have been approved by the FDA for treatment in patients with cutaneous T-cell lymphoma. This study will compare the efficacy and safety of the two doses of Targretin®, each in combination with PUVA therapy, with the goal of maximizing patient response.
Trial offered in Chicago, IL, Tyler, TX, and Olympia, WA.
For further information, please contact:
Humaira Serajuddin Millennix Inc.
3020 Westchester Ave., Suite 202
Purchase, NY 10577
Trial Summary: This phase II research study will determine the response rate and toxicity associated with interleukin-2 (IL-2) therapy given as subcutaneous injections in patients with mycosis fungoides (MF) or the Sézary syndrome (SS).
Patients will self-administer the investigational drug, Proleukin (recombinant IL-2) for four consecutive days, preferably Monday through Thursday, followed by a two-week resting period with no injections. The investigational drug will be given every eight weeks as tolerated by the patient and continue for two cycles past best response. Patients demonstrating a persistent partial response may continue on the investigational drug as tolerated until there is evidence of progressive disease.
Trial offered in Boston, MA.
For further information, please contact:
Tracy Bell, R.N., M.S.N., Research Coordinator
Cancer Clinical Trials Office
New England Medical Center
750 Washington Street, NEMC #245
Boston, MA 02111
Trial Summary: Transimmunization is a new procedure for greater than stage 1A cutaneous T-cell lymphoma (CTCL) patients, that more efficiently brings denditric cells in contact with cancer cells to stimulate an anti-tumor immune response.
Patients must be 18 or more years of age; have a histologic confirmed diagnosis of CTCL; be at a clinical stage greater than 1A; and be able to tolerate intravenous fluid shifts. Treatments are given in an outpatient setting on three consecutive days (approximately three hours per day), repeated monthly for three months. Previous or current treatment with Extracorporeal photochemotherapy (ECP), or photopheresis, does not make a patient ineligible for the study.
Trial offered in Connecticut.
For further information, please contact:
Inger Christensen, R.N.
Department of Dermatology
Yale University School of Medicine
by Judith Shea, Treasurer, Mycosis Fungoides Foundation
Memories are a source of strength when we lose a loved one. When touched by their death, many of us search for a way to make their memory last forever. When my husband died in 1996, I had two goals: to find a way to help others affected by MF and to honor his life by finding a way to create a lasting memory.
When friends and relatives offered their kind support, I asked if they would consider contributing to a memorial fund that could be used in some way to help others with MF. This money was set aside until that opportunity became known. In 1998, this money was used as the seed money to assist in starting the Mycosis Fungoides Foundation. Since then, each time an opportunity arises to give a gift as a memorial in someone's name or even just my birthday gift (I don't need anything else to dust!), I ask that they send it to the Foundation.
I can't tell you how much knowing that other patients with MF and other CTCL diseases benefit from the information and support that is now available through the Foundation has helped me. Each time I read about or hear from someone who has found the Foundation, I put a smile on my face and think about how far we have come in only a few short years.
There are many projects that the Mycosis Fungoides Foundation would like to complete and these can be done in the memory of someone you love. Or you can create your own memorial fund and donate it to the general fund of the Foundation. If you have the need or an opportunity to direct memorials for anyone in your family, would you think about how much of a difference any amount can make? If your employer matches funds donated to non-profit organizations, please be sure to make a request. From little acorns, big and strong oaks grow.
In Loving Memory of Lee Allen Cohen 1926-1996.
There is a lot of money available for research in general, cancers and lymphomas. Because CTCL is an orphan disease (affecting a small number of individuals), the money available is also very small. Your contribution can make a huge difference.
You can support the ongoing work of the Mycosis Fungoides Foundation with your membership. To take our mission into the future, the Mycosis Fungoides Foundation welcomes special contributions, bequests, and memorial donations.
For many people, matching gifts from their employer is an easy way to increase the power of their donations.
Please help us work for increased funding and research for CTCL as well as provide education and support for patients. Enable us to join with research centers, investigators, other foundations and federal agencies toward this goal.
Together we can make a difference.