MFF at the NIAMS Coalition Capitol Day
Harriet and Irv Goodman spent the day advocating with the Mycosis Fungoides Foundation at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition Capitol Day in Washington, DC. The following is an account of their experience.
On March 11, we had the rare privilege of attending the NIAMS Coalition Capitol Day in Washington, DC.
The NIAMS Coalition is a broad-based network of nearly 60 voluntary and professional organizations supporting the mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The role of the NIAMS Coalition is to broaden awareness to Capitol Hill and the public about advances in arthritis, musculoskeletal and skin disease research. Through the NIAMS Coalition Day and other special events, the Coalition brings together representatives of the medical and patient community to educate federal leaders on the value of the vast medical research supported by NIAMS.
The NIAMS mandate is extensive: it leads the federal effort on research into the basic understanding, causes, incidence, treatment and prevention of diseases of bone, joints, muscle, skin and connective tissues. These diseases and disorders are common, costly, chronic and debilitating.
We heard speakers who represented NIAMS, American College of Rheumatology Government Affairs Committee, and the House Labor, Health & Human Services Education Appropriations Subcommittee.
Our team visits to Congressional offices of Iowa, Michigan, Illinois and Ohio gave us the opportunity to express the crucial need for Congress to approve an increased allocation of funds for medical research in the area of the NIAMS sphere of interest.
There are many hands reaching out for government funding. With the world situation as it is today, and the economy being "stretched," it is unlikely that the 10% increase NIAMS is proposing will be approved. Some senators are submitting a request for 8.5%. The president's budget allots a mere 2%.
It is imperative for citizens to phone and/or e-mail their congressmen. The voices of CTCL patients and their families and friends must be heard. We CAN make a difference!
Spending the day with Judy Jones was very special. She is a dynamic person, and we will have good reason to thank her for spearheading the Mycosis Fungoides Foundation along with Judith Shea. Listening to physicians and patients present their stories was indeed a very special and memorable experience for us.
by Judy Jones, Executive Director, Mycosis Fungoides Foundation
The Mycosis Fungoides Foundation is moving forward at a rapid pace considering we have only been in existence four years. Since our last newsletter, we now have an active Board of Directors that is responsible for strategic planning and major policy decisions. The board also pays close attention to the organization's financial resources. Finally, the board is responsible for MFF accountability and integrity. The success of nonprofit organizations depends on good board members. We have gathered a group of people who believe in our mission and are willing to spend the time to do the job well. Take time to read about them in this issue of our newsletter.
Thanks to all of you who have joined the Mycosis Fungoides Foundation, those who have contributed a little extra, and those who have donated in memory of loved ones. You have kept us running. All of the money donated goes directly into patient services as we have no full-time staff. As we grow, we realize that a few people aren’t able to provide the funding for everyone. If you have not joined us yet, please take the time right now to fill out the form in this newsletter and send it in.
The Board of Directors is now kicking off our first fundraising effort. Watch for a letter in your mailbox. The most common comment I hear from patients is, “I was scared and lonely until I was able to find more information about a disease I had never heard of before.” Many of us went years not having that information. One of our goals is to provide this service to patients and to let them know there are others out here that understand. Help us to continue in that effort.
Meanwhile, MFF continues to provide awareness of the disease, so physicians will recognize it and be able to diagnosis it earlier. We met with many physicians and researchers last month at the American Academy of Dermatology Annual Meeting. We also met many wonderful nurses at the Dermatology Nurses meeting who have requested our brochures and have kept us busy sending them out.
As you can see, there are many exciting opportunities opening to us. We look forward to your continued support.
by Dennis DeCola, Board Member, Mycosis Fungoides Foundation
Many of us rely on a non profit volunteer fire company to protect our families and belongings from fire. Few of us truly believe that if we had a fire, the fire company really would not be there to help us. Actually, each year many of us rely on non-profit organizations to put out all types of fires. In return, these organizations need our help to provide the services and benefits they deliver. Without our help through contributions and volunteering time, these organizations would die. Good people who have fallen on tough times depend on organizations such as Meals on Wheels for their next dinner, a Ronald McDonald House for a place to stay while their child goes through chemotherapy or organizations such as the Mycosis Fungoides Foundation as a place to turn to when diagnosed with a dreadful rare disease. Without contributions from people who are not so unfortunate, such organizations would become extinct.
You might be asking yourself right about now "why are all these unfortunate people my responsibility"? I have my family to feed, educate and to take care of and I don’t need any other help! If you find yourself thinking this way, you better hope there are others contributing to that volunteer fire company or pray you never have a fire. I am also glad that, at this time, your family does not need any help. Be aware that can all change by the time you get finished reading this article. I can tell you from personal experience that it can change in an instant.
It happened to me on a beautiful August day. I was truly a fortunate person. I had a house, health insurance, a good job and a great family. I had the pleasure of living next door to my mom who was in great health. That day mom awakened with a pain in her side. Like 20,000 other Americans that year she was diagnosed with pancreatic cancer. Suddenly the family that needed no help from anyone needed the help of everyone. One not for profit organization after another came to our aid. They came with patient information on what to expect, counseling on how to cope with the diagnosis, helped get mom to and from chemotherapy, kept her company during the day when I had to work and there was even a non profit group that helped with cleaning the house. They helped us all get through a very tough time. Mom and I are grateful to all of them.
If you're feeling like I once felt, that you could never possibly be in need of any help from a non-profit group or volunteer help, remember that fires start quickly. We all need help putting them out. It really is the responsibility of all of us to help those less fortunate. In life no matter what problems each of us may have it seems there is always someone less fortunate than we are.
This year 1000 Americans will learn they have cutaneous T-cell lymphoma. They will have no idea what this is, what to do for it or what to expect. They will have a fire to put out. It is only through your donations that the Mycosis Fungoides Foundation will be there to help them put out the fire.
by Dan Goodman, Board Member, Mycosis Fungoides Foundation
The Mycosis Fungoides Foundation has established many important and ambitious goals in the pursuit of improved patient care, greater awareness of the disease, and ultimately, we hope, a cure. To secure the necessary financial resources to achieve these goals, the board of directors has begun implementing a development strategy. We have a long road ahead of us, but as the saying goes, every journey begins with the first step.
There are three main components of the development strategy: grassroots outreach, pursuit of major gifts from foundations, and inclusion in planned giving campaigns like the United Way. Each is an important component of the development strategy, and each complements other MFF goals. Here, I will focus on the grassroots outreach, because it’s starting soon, and it relies critically on your participation, both as a donor, and as a spokesperson for our goals.
You’ll see our grassroots outreach effort begin in the next few weeks with a letter asking for your support. The goal of a grassroots campaign is really to get as many individuals to participate as possible. While the typical individual contribution is relatively small, an effective grassroots campaign is a great way to reach the handful of donors who are able to make large contributions. Perhaps even more importantly, grassroots outreach helps the foundation build a relationship with its members, including patients, families, friends, and physicians. As more individuals participate, the foundation is better able to demonstrate the commitment of a strong membership base. That demonstration of commitment is critical to everything the foundation does, whether it’s lobbying politicians or seeking major gifts from multi-billion dollar charitable foundations.
So, please be on the lookout for our letter asking for your support. Please be as generous as you can, but also know that every amount helps, no matter how modest. In addition to instructions on how to contribute, you’ll find ten additional donation cards in the envelope. Here’s your opportunity to really get in on the ground floor of building an organization of which you can be proud! Those cards are for you to distribute to your friends, family, neighbors, and anyone else you think might want to lend some support. It can be awkward sometimes to take that step and ask a close acquaintance to help financially, but this is what we must do to help ourselves and our loved ones who suffer from MF. And remember, each person’s support does not have to be large in terms of dollars. Simply adding more individuals to the ranks of "MFF Supporters" will do wonders for us as we execute the rest of our development strategy!
On behalf of the MFF Board and patients everywhere, thank you in advance for your support. With hard work and a little luck, the MFF’s development strategy will lead us down the path to improved patient care, and ultimately, a cure.
Volunteers are the backbone of the Mycosis Fungoides Foundation. We sincerely appreciate the support they provide. In the last several months, we have had a number of volunteers help us out, and many more that are awaiting assignments.
In memory of Becky Keister, her sister Kathleen Bourgeau and her parents Fred and Carol Ruhl were quite helpful in putting together a flyer for the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Day advocacy event that the Mycosis Fungoides Foundation participates in every year. This was especially important for our request for additional funds for CTCL research.
Chris Spruce and others have helped the Mycosis Fungoides Foundation in the area of grants and funding by offering their services and expertise.
We would also like to thank Jim Tepel of Tepel Brothers Printing in Troy, Michigan for providing us quality printing (with a smile) at a very reasonable price.
We would like to express our heartfelt gratitude for all the help we have received.
If you would like to provide the Mycosis Fungoides Foundation with your services, let us know by calling 248-644-9014 or visiting us at www.mffoundation.org.
University of Michigan MBA Students Provide Services for MFF
by Judy Jones, Executive Director, Mycosis Fungoides Foundation
Last year, during a visit to Los Angeles for a meeting, I had the good fortune to spend an afternoon with Dr. Fred Kiester, Chair of Entrepreneurship, College of Business, Loyola Marymount University. As we toured the campus, we discussed the issues involved in working with a small non-profit organization. He mentioned that I should talk to Len Middleton at the University of Michigan, who is a consultant and teaches an Entrepreneurial Management Course.
Both of these men have an amazing ability to inspire their students and to instill the importance of giving something back to the community. The last two semesters I have had the pleasure of working with two different groups of MBA students who have helped us with structure and strategic planning. They have provided us with hours of research and recommendations that we would not have had the time or resources for.
This year the Mycosis Fungoides Foundation was represented at the following medical meetings: Dermatology Nurses Association, American Academy of Dermatology Annual Meeting, International Society of Cutaneous Lymphomas.
Coming up in May, representatives from the Mycosis Fungoides Foundation will attend the International Investigative Dermatology meeting and the American Society of Clinical Oncology.
Dermatology World had an article in their March issue about the nitrogen mustard shortage and how it was affecting patients.
We are updating our web site and will be adding treatment information soon. Check out the changes at: http://MFFoundation.org.
Judy Jones, Executive Director
Co-founder of the Mycosis Fungoides Foundation.
By profession, Judy is an educator and a licensed professional counselor. Her volunteer work with the Mycosis Fungoides Foundation has become full-time.
Claudia Day, Board Member
Economist, Bureau of Labor Statistics, Washington, D.C. Working on a master's degree in interior design. Former board member on homeowners association. Diagnosed with MF in February, 2000.
Marilyn Eccles, Board Member
AT&T Project/Product Manager for more than 25 years, currently retired. Former board member of the Multiple Sclerosis Foundation in Ft. Lauderdale, Florida.
Dan Goodman, Board Member
Dan Goodman was inspired to take a leadership role in the MFF by his mother, a patient. Dan brings ten years of professional experience in strategic planning to the board. He has also led fundraising efforts for an assisted living facility outside of Kansas City, and for the class fund at his alma mater, Amherst College. Dan currently develops product strategy for America On-line. In his spare time, he volunteers at the National Zoo, and enjoys spending time with his teenage nephews.
Judith Shea, Board Member and Co-founder of MFF
Co-founder of the MFF; retired corporate quality control vice president and real estate professional; mother and grandmother; was a care taker of a Sézary syndrome patient.
Stuart R. Lessin, M.D., Medical Liaison to Medical Advisory Board
Stuart R. Lessin, M.D. is Director of Dermatology at Fox Chase Cancer Center and Chief of the Division of Dermatology at Temple University School of Medicine in Philadelphia, Pennsylvania. He has clinical and research expertise in cutaneous lymphomas.
Dennis DeCola, Industry Advisor
Dennis holds BA and MS degrees in biology. He has spent twenty-eight years with Johnson and Johnson, working in the areas of quality assurance, regulatory affairs, and clinical research. He is now Vice President of Compliance, assuring that company products meet specifications and are in compliance with domestic and foreign government regulations.
Michael Young, Industry Advisor
Michael graduated from Kenyon College and did graduate work at Ohio State University. He is executive Director, Strategic Marketing and Communications, Ligand Pharmaceuticals, Inc., which develops and markets new therapies for cancer and cutaneous diseases. Michael was named Medical Marketer of the Year in 2001, and was recently elected President of the Medical Marketing Association.
The Mycosis Fungoides Foundation, in partnership with the Society for Investigative Dermatology, has organized a Cutaneous T-cell Lymphoma (CTCL) Satellite Symposium. The goal of the symposium is to promote awareness, advance patient care and facilitate research in CTCL by providing an annual venue to highlight new physicians and scientists to the field and new advances in the treatment of CTCL.
The inaugural CTCL Satellite Symposium will be held at the International Investigative Dermatology 2003 meeting, Thursday, May 1, 2002 at the Fountainebleau Hilton in Miami Beach, Florida, USA. International Investigative Dermatology 2003 is the fourth joint meeting of the European Society for Dermatologic Research (ESRD), Japanese Society for Investigative Dermatology (JSID)
and the Society for Investigative Dermatology (SID).
Support for the CTCL Satellite Symposium has been provided by educational grants from the following sponsors:
ICN Pharmaceuticals, Inc.
Ligand Pharmaceuticals, Inc.
A group of four CTCL patients gathered this winter for a face-to-face meeting. Over an informal lunch, attendees were able to share stories and meet others with CTCL. For some, it was the first time they had met anyone else with this disease. Kitty Farnham was one such person, saying:
Not until our face-to-face lunch had I ever met anyone else with CTCL. And, although each of us is experiencing the disease differently, I found it comforting to meet and talk to real people who, like me, are dealing with this challenge, this threat, and are also continuing to live ‘normal’ lives. We didn't meet as sick people; we met as people facing a common challenge, sharing information and experiences, and ready to be of help and support to each other.
All participants in the face-to-face meeting expressed interest in hearing personal experiences of others, including different stages, levels of treatment, and coping mechanisms. Janet Kowallek (who was six months pregnant at the time the photo was taken) said that, “this is a disease that is rare and only someone with personal experience can know how you feel.” Another attendee, Larry Miller, agreed with Kowallek’s sentiments, adding, “It felt good to meet someone who has the same cares, concerns and fears that I do.”
The woman who helped organize the event came away from the meeting feeling a little less alone. She said that, “it’s nice to see that people can still have a positive outlook.” After the experience, she has “gained a stronger network of people that [she] can talk to and ask questions. Having put a name with a face makes it that much better.”
San Francisco, CA
It was a small but mighty group in San Francisco. The war demonstrations made travel difficult in the downtown area, but Steve Griffith, David Elefant, Judith Shea and Judy Jones met with Steve Cooper and Frank Strobl of Therakos for lunch. The Therakos group shared information about the new clinical trials now available for using photophresis in early stage MF.
Judy Jones had met David Elefant at a face-to-face meeting in Los Angeles a few years ago, and they had a nice time catching up. This is one of the things Judy Jones enjoys about meeting others. Unfortunately, she was having such a good time that she forgot to take pictures!
If you would like to know how to arrange and publicize a face-to-face meeting, or to find one in your area, please visit us on the web at www.mffoundation.org, or contact the Mycosis Fungoides Foundation at 248-644-9014.
(December 2002 – March 2003)
We appreciate the thoughtfulness of those families who designated that memorial gifts be made to the Mycosis Fungoides Foundation in memory of their loved one. These generous contributions support the progress of our mission.
Mary Etta Connella Alachua, FL
Boulden Griffith Hillsboro, OR
Alexandra Hoffmaster MI and CA
Thomas E. Homulka Mt. Pleasant, PA
Becky Keister Millmont, PA
Tom Kellogg Lake Orion, MI
Ruth Robbins Sarasota, FL
Paul Zutz Torrance, CA
In Honor of
(December 2002 – March 2003)
You can honor a friend or family member for any occasion with a gift to the Mycosis Fungoides Foundation. Please include the name and address of the individual being honored so that acknowledgement of your kind donation can be sent.
Aileen and Arthur Weiss Columbia, SC