In honor of American Heart Month, February 2001, GuideStar asked nonprofits engaged in the fight against diseases to share their experiences.
From smoke-free workplaces to public service ads urging us to live healthy lifestyles, nonprofits dedicated to fighting diseases have had a tremendous impact on American life. The organizations continue to engage in an impressive range of activities.
As they work to achieve their missions, the groups must overcome many of the same problems confronting nonprofits throughout the independent sector. They also encounter additional difficulties arising from the nature of their work. Despite these challenges, the nonprofits' staffs and volunteers stay focused on their goals
Diverse Missions—Helping Others Cope with Illness
Many organizations assist individuals who are coping with specific medical conditions. Otter Creek Research in Springport, Michigan, has created Dyslexiarx, "a computer program designed to cure dyslexia." According to director Jerry Strawderman, Dyslexiarx "is the only program that cures rather than compensates for the disability afflicting 5% of the world's population." He continues, "The people who have used the original platform program had their lives significantly changed."
In Cincinnati, Ohio, the Clovernook Center for the Blind is instituting two new programs to help people with vision problems retain their independence. Vice president for development and community relations Janet Burns describes the first initiative: "The Low Vision Clinic will help people of all ages maximize their remaining sight through optical aids, non-optical aids, and specialized training."
The second new program, she explains, will reach out to "adults 55 and older who are losing vision due to age-related blindness. ... the Transitions Program ... will equip these older adults with the skills they need to adapt to major changes in their lifestyles and remain in their own independent living environment."
On the West Coast, the Southern Oregon Lions Sight & Hearing Center helps residents of two Oregon counties purchase eyeglasses and hearing aids. Farther south, a new California nonprofit, Benetech, is supporting efforts to create an Internet library of scanned publications that will be available to individuals with vision problems or reading disabilities.
Benetech grew out of the success of Arkenstone, Inc., a nonprofit that manufactures machines to read text aloud, enlarge it, or create Braille. Benetech president Jim Fruchterman observes, "There is increasing demand for accessibility technology because of changes in regulations that require greater access for people with disabilities."
The Dystrophic Epidermolysis Bullosa Research Association of America in New York City raises funds to help offset the costs of treating epidermolysis bullosa (EB). According to development assistant Mary Hamilton, this genetic skin disorder "causes sufferers a life of pain as it causes the formation of blisters, similar to third degree burns, all over the body, both externally and internally."
She continues, "EB places a chronic emotional and financial strain on families trying to cope with the daily care needs of their children (some need 3-5 hours of wound care a day) and the cost of bandaging, which can be as high as $50,000 per annum. Not all of these expenses are covered by insurance. The child with EB often requires special shoes and clothing, adapted transportation, and adapted equipment for bathing and eating that places an addition strain on a family's resources."
Other chronic illnesses can deplete financial resources. The Serra Project of Los Angeles offers housing for "the growing number of people left homeless by their battle with AIDS." Program director Pamela Wegner explains, "The individuals and families in our homes represent a cultural cross-section of groups hardest hit by the epidemic. All residents have entered our programs with incomes at or below the poverty level."
On the East Coast, the AIDS Community Residence Association (ACRA) provides housing for individuals living with HIV/AIDS in the Durham, North Carolina, area. Noting that "the Piedmont HIV Consortium has identified housing as the greatest and least met need of people with HIV/AIDS," director of development Mercer Tyson states, "ACRA means the difference between a safe and comfortable place to call home, and life in an acute care facility or in substandard housing, in overcrowded conditions, or on the streets."
In Los Angeles and Boston, Tuesday's Child sees "poverty as an underlying condition of HIV." John Sheeran, the nonprofit's chief executive officer, describes its mission: "Tuesday's Child is passionately committed to meeting the material and emotional needs of families where HIV has an impact on children. Through Family Services programs which deliver basic necessities, Tuesday's Child seeks to mitigate the effects of poverty on low-income, HIV-impacted families so that they may better focus on medical and psychosocial care."
Providing emotional support to patients and their families is an important component of many nonprofits' missions. Two years ago, the Glaucoma Foundation established Young and Under Pressure (YUP), an online support group for teens and young adults with glaucoma. According to director of programs Ali Hoden, "Because the incidence of glaucoma is low in people this young, and most peers don't have serious health issues to worry about, before YUP there was nowhere for these young people to turn. YUP members provide emotional support regarding treatment options and much more."
Today, YUP has members across the United States and in twelve countries on four continents. Participants derive more than psychological benefits: "It's amazing how the interaction with one another can really encourage compliance with treatment plans and on-going communication with their doctors—two very necessary requirements of preserving vision once someone is diagnosed with glaucoma."
Affinity Films's "Between Us Project" also demonstrates "the importance of the mind in the body's healing experience." The project's first-aid kit for women newly diagnosed with breast cancer features a video of survivors of the disease. Founder-director Mary Katzke explains: "Since we are all long term survivors of breast cancer, we know first hand just how critical it is to identify with survivors from the very beginning—it gave us courage to face difficult treatment scenarios, troubled family members, and helped us keep long term goals in sight. Our doctors appreciated our ability to focus on the medical aspects of treatment while in their care, rather than seeking time-consuming, nervous handholding which their schedules do not permit. No one knows better than 'girlfriends' who've been there."
Supporters of the Twin to Twin Transfusion Syndrome Foundation in Bay Village, Ohio, are another group that have "been there," notes founder and president Mary Slaman-Forsythe. "We are receiving more and more support from the parents who personally go through TTTS."
"Dedicated to providing educational, emotional and financial support for families, medical professionals, and other caregivers before, during and after a pregnancy diagnosed with twin to twin transfusion syndrome," the foundation strives to inform parents that treatment for the disorder is available. The organization's goal is "to make it standard for mothers pregnant with twins with a single placenta ... to have weekly ultrasounds from a high risk perinatologist or fetal-maternal specialist (same doctor) from 16 weeks gestation through the delivery of the twins."
Diverse Missions—Educating Patients and Their Families
Information is a valuable weapon in the battle against disease, and a number of nonprofits are working to put that weapon into the hands of patients and their families. Men Against Breast Cancer (MABC) in Rockville, Maryland, is developing "Survival Skills for Men," a program to "educate and empower men...to become effective caregivers when breast cancer strikes their family." "Breast cancer," explains MABC president and cofounder Marc Heyison, "is a family issue with devastating effects on the entire family."
The National Reye's Syndrome Foundation in Bryan, Ohio, is engaged in a campaign to inform adults that Reye's Syndrome affects people of all ages. Although aspirin bottles warn users not to take the drug to treat symptoms of viral diseases such as a cold, the flu, or the chicken pox, most people believe that only children contract Reye's Syndrome. Unfortunately, reports Susan Landversicht, the foundation's director of development, "No age is immune! Adult cases of Reye's Syndrome go undiagnosed (misdiagnosed) and are not discovered until it is too late. ... [Our] biggest challenge is educating the population to the fact that adults also get Reye's, and most die."
Nonprofits also work to provide information to individuals coping with little-known or misunderstood diseases. Gail Kansky, president of the National CFIDS Foundation in Needham, Massachusetts, finds that "the hardest part" of her job "is keeping our members current and trying to keep their spirits up amid so little research and so much misunderstanding about" chronic fatigue and immune dysfunction syndrome.
She explains, "People who suffer daily from an illness and one that is also so misunderstood are not only cursed with the disease but with the ignorance and misinformation on it as well. When we can actually have a child diagnosed due to our educational literature instead of being punished for being sick ... or an adult get disability payments by providing information about what is needed, it makes it more than worthwhile while we wait for research to unravel the mystery of the disease and, eventually, find out how to block the effects."
According to Heather C. Guidone, director of operations of the Endometriosis Research Center (ERC) in Delray Beach, Florida, women who have endometriosis encounter similar prejudices. "There are many who would treat this disease as an insignificant issue and who do not understand the far-reaching impact Endometriosis can have on the life of a patient."
Last year, the ERC turned to technology to combat the problem, sponsoring an Internet symposium about the latest research on and options for treating the disease. The "event was so successful that we have been able to secure repeat sponsorship for the 2001 event. ... The ERC's understanding and use of new media enables us to reach out all over the globe; not only to women and their families, but also to collaborate with scientists and physicians on disease research."
Jane Massey, chief operating officer of the March of Dimes, finds that patients and their families want this kind of information. The March of Dimes is "seeing a much higher demand for information" as the number of calls to its Resource Center increases. Massey believes that people are contacting the March of Dimes because they want information they can trust. "The public," she observes, "is demanding a higher quality of credible information."
Other nonprofits are encountering the same thing. Dave Switzer, marketing and public relations director of the PKD Foundation in Kansas City, Missouri, relates, "The demand is greater than ever for the services of the PKD Foundation. As more people discover they have polycystic kidney disease, they want information about it. ... Patients and their families want to know where the latest research stands in the field."
Delores M. O'Leary, director of the Sarcoid Networking Association in Sumner, Washington, reports that the organization is receiving more "calls from individuals for assistance in finding out more about this disease be they the patient, family, friends or co-workers." The number of calls seeking "information about treatment and the alternatives to corticosteroid treatment of this disease" is also increasing. According to Darrell Cookman, communications coordinator for the Cornelia de Lange Syndrome Foundation in Avon, Connecticut, "New parents, relatives, friends and professionals contact the CdLS-USA Foundation each day seeking information and support."
Ellie Schlam, public relations director of the National Kidney Foundation in New York City, traces the growing demand for information to changes in the health care system: "With the cutbacks in health care, many patients are receiving less time and attention from their own physicians and are consequently looking to associations like ours to fill in the information gaps. Whereas a few years ago, we received a few hundred calls each week, we now receive more than 2,000 calls on a weekly basis and have a staff person completely dedicated to answering patient and family calls and e-mails and sending out relevant information."
Virginia T. Ladd, president and executive director of the American Autoimmune Related Diseases Association in East Detroit, Michigan, agrees. "There is much more demand for our services, especially more of a demand from persons seeking information on the web. ... people are doing their own research and not just ... relying on their physician for answers."
Diverse Missions—Informing Medical Professionals
A number of organizations seek to inform the medical community about specific diseases. Health Information Network "provide[s] a state required HIV course for all health care providers" in the Seattle–King County, Washington, area. Executive director Kathi Knowles notes that the organization "also link[s] callers with other health related community resources in the region."
The P.R.Y.S. Foundation in Folsom, California, has identified "a severe demand for doctors to be educated on" Post-Polio Syndrome (PPS). "So many of our people," explains Shari Fulton, national vice president and director of medical education, "cannot find a doctor who is even familiar with this disease." Because lack of information hinders physicians' ability to diagnose and treat PPS patients, the P.R.Y.S. Foundation is "working on getting grants to ... help educate doctors so they can help PPS people."
Even finding specialists to treat well-known illnesses such as rheumatoid arthritis can be a challenge. Robbie Baker, director of development for the American College of Rheumatology Research and Education Foundation(REF) in Atlanta, Georgia, reports, "The number of physicians specializing in rheumatology has decreased by 46% since 1992. ... The result is a limited number of specialists in the 21st century when they are needed the most." To counter this trend, her organization "has tripled its support of rheumatology training—a commitment unique to the REF" during the past two years.
Other nonprofits share American medical techniques with colleagues in developing countries. Headquartered in Mountain View, California, Interplast sends medical teams to the Third World to repair children's cleft lips, cleft palates, and disfigurements resulting from burns and other injuries. Director of communications and public education Mary Spillane reports that the organization also "provide[s] medical education and training" that enables "doctors and nurses around the world [to] advance their skills and provide corrective surgeries to the poor on their own." As a result, "families in need might not have to wait a year or longer for Interplast teams to come to their town; the help their children require can be available year-round, from local doctors."
She continues: "Interplast currently partners with surgeons in Nepal, Peru, Ecuador, India, Bangladesh, and Zambia who manage their own outreach programs. We harness the power of the Internet to facilitate quality assurance management and medical consultations and communications. We equip the surgeons with a digital camera, laptop computer, and access to the Internet; they document each case with before and after photographs and e-mail the images along with patient history to a special website managed by the plastic surgeons on Interplast's staff."
A Pennsylvania organization, Gift of Life International, sends American physicians and nurses overseas to perform pediatric open-heart surgery. So far, Gift of Life teams have repaired the hearts of children in Syria, West Africa, Mexico, India, Romania, and Colombia. "In addition to the operations we perform," notes the organization's chairman, Bradley N. Stanton, "we are teaching the host medical team the latest techniques in pediatric heart surgery, critical care nursing, hygiene, and in some cases proper management of their 'blood bank.'"
Work sponsored by the Tom S. & Marye Kate Aldridge Charitable and Educational Trust in Oklahoma City, Oklahoma, also is shared with foreign medical personnel. Chairman Robert S. Aldridge explains, "The Tom & Marye Kate Aldridge Foundation has been supporting the work of the National Institute for Developmental Delay since our inception in 1995. This organization services persons with developmental delays in the Shawnee, Oklahoma area. Procedures developed there are in use in India, Europe, and Australia and will soon be in place in Tlaxaca Mexico. NIDD has a contract with Professor Helburgge of the University of Munich to train health care professionals in the Votja method of early diagnosis, and early intervention here in Oklahoma."
Diverse Missions—Supporting Research
Supporting medical research is another important part of the nonprofits' missions. Although Operation Smile focuses primarily on sending surgical teams to the Third World to correct cleft lips and cleft palates in children and young adults, the Norfolk, Virginia, organization is "also committed to research." Chief medical officer Dr. Karen Remley explains, "Operation Smile works with several organizations and has plans to team up with even more research groups to determine the possible relationship of these deformities to nutrition and genetics. Through research and education, we hope to reach our ultimate goal—to eradicate the occurrence of cleft lips and cleft palates at birth."
As its name implies, the Lynne Cohen Foundation for Ovarian Cancer Research in Santa Monica, California, raises money to fund research on ovarian cancer. Director of research and public relations Trudy Harris describes the importance of these efforts:
25% of all women diagnosed with ovarian cancer have late stage disease and only a 12% chance of surviving five years. This is because there is NO early detection test for ovarian cancer. A Pap smear does NOT detect it. The Cohen sisters are dedicated to changing those statistics and in order to do so, our Foundation raises funds for early detection, for high risk clinics to support family members of women who have been diagnosed, and for better clinical treatments for women struggling with the disease. All of these areas of women's healthcare are in dire need of research dollars.
Nonprofits support other cancer research as well. According to Amy Keener, community relations coordinator for the Leukemia & Lymphoma Society in Dallas, Texas, the society seeks "to find cures for blood cancers and to assist patients and their families." Dr. Donald G. Tarver, administrator of the Pacific West Cancer Fund in Seattle, Washington, sees "an increased demand for research funding in the area of medicinal plants (domestic and foreign) and an intense demand for new drug development and trials involving a more effective utilization of cancer patients."
Paul Murphy, president of the International Society for Mannosidosis & Related Diseases, defines the Baltimore, Maryland, nonprofit's mission as "aid[ing] research efforts to find therapies and treatments for which few or none now exist." Darrell Cookman reports that research into Cornelia de Lange Syndrome "seeks to better understand both the origin and manifestations of CdLS."
A number of organizations take pride in the support they give medical research. The PKD Foundation, David Switzer states, "provides research dollars to support some of the most cutting edge research in the world." He notes, "We have doubled the amount of funds available for research in the past two years! (From $1 million to $2 million.)" Dave Hodgson, vice president of the Illinois chapter of the Huntington's Disease Society of America, points out, "Our organization ten years ago barely provided $100,000 for research. Today, we are funding over 2 million dollars for research towards finding a treatment or cure. That's an incredible increase."
For Peter Morton, vice president of the Morton Cure Paralysis Fund in Minneapolis, Minnesota, the best part of his job is "making the final contribution to our research beneficiary at the end of the year. It is very satisfying to know that we are having a substantial impact on spinal cord injury research." Virginia Ladd cites "being able to make a difference and inspire researchers to begin to look at autoimmunity as a singular group of diseases" as the most gratifying part of her work with the American Autoimmune Related Diseases Association. These efforts, she notes, are leading to "much more collaboration in research and ... bringing us much closer to a cure."
Dr. Thomas R. Cech, president of the Howard Hughes Medical Institute in Chevy Chase, Maryland, sees a bright future for medical research. The Nobel laureate states, "The convergence of molecular biology and high-powered computing will transform both the understanding of basic cellular processes and the practice of medicine. Researchers will not just be able to crunch numbers faster; rather, they will use emerging databases and tools to address biological problems in fundamentally new ways."
Special Challenges—Posed by the Diseases
Nonprofits engaged in the fight against disease face the same challenges as organizations in the rest of the independent sector. Brian Fitzek, associate director of communications for the American Lung Association of Maryland, describes the shared obstacles:
Receiving support of time and money is more challenging today than a decade ago. Volunteers are no longer housewives, but rather college students and young people who work full-time. ... Also, donor bases are changing with a significant amount of financial support coming from businesses rather than individuals. In addition, there are more organizations competing for that support.
... While the amount of money donated in this country has increased, the number of organizations seeking it has increased faster. In the last two decades, the nonprofit sector has grown by 60%. The nature of giving, where it comes from and where it goes, is evolving swiftly and in ways non-profits are just beginning to understand. The younger donors often hold new ideas about how their money should be spent.
Organizations dedicated to fighting disease also encounter difficulties arising from the very nature of their work. Shari Fulton reports that "getting the help we need" is a problem for the P.R.Y.S. Foundation. "With everyone having PPS, you cannot always depend on PPSer's energy levels to carry out tasks. We are completely run by volunteers and have only one well person on our Executive Board."
Geography presents a challenge for the Lowe Syndrome Assocation in West Lafayette, Indiana. Explains director of public and scientific affairs Kaye McSpadden, "The hardest part about running our organization has been dealing with the challenge of being 'few and far between.' Because Lowe syndrome is a rare condition, the members of our organization are spread out all over the United States and over a dozen other countries. For instance, there are ten members of our Board of Directors, and they are from ten different states!"
The American Lung Association of Mississippi must try to overcome public opinion to gain support for its clients. Elizabeth Barber, the organization's executive director, notes, "People do not find much help or sympathy when they have tobacco related illnesses."
For Janie Weyl, president of the Breast Cancer Alliance in Greenwich, Connecticut, "the hardest part of our mission is educating women on the importance of early detection through breast self examination and mammograms. To make early detection of breast cancer accessible to every woman, the Alliance underwrites mammograms for underinsured women. It is frustrating when these services go unused."
Danny Chun, director of media relations for the Alzheimer's Association in Chicago, Illinois, states that he and his colleagues "are in a race against time and have a great sense of urgency because of the looming epidemic of Alzheimer's (going from 4 million Americans with Alzheimer's to 14 million by 2050). We must increase public awareness of Alzheimer's disease as a major public health issue and raise concern about the disease and the magnitude of its impact on individuals, families and societies around the globe."
ALS Association president Michael Havlicek feels the same pressure. "There is always the challenge of the urgency associated with a fatal disease. Nothing can ever be accomplished fast enough and nothing but the ultimate elimination of the disease is enough." Rebecca Moore, executive director of the ALS Association's Evergreen Chapter in Bellevue, Washington, agrees:
Many ALS patients and their families would like to see research results sooner than they do. With amyotrophic lateral sclerosis there is no known cause or cure and patients normally do not survive past 2-5 years after their diagnosis. This places real urgency for wanting to see advancements towards treatments for ALS.
Special Challenges—Posed by Medical Advances
Ironically, advances in medicine generate their own challenges. In Saint Louis, Missouri, the Delta Gamma Center for Children with Visual Impairments is finding that it must adapt its programs to meet the needs of a changing clientele. The nonprofit's executive director, Debbie Naucke, describes the situation:
The Delta Gamma Center provides early intervention (education and therapy services for children ages birth to three years) and family support services for families with children who are visually impaired or blind. The actual demand for early intervention seems to stay fairly constant, but the population we are serving has changed, which affects the treatment needs of the children we serve. Nationally, about 65-70% of persons with visual impairments have additional disabilities; at least 70-75% of the infants and toddlers referred to us have other medical and developmental challenges. This is usually attributed to medical advances, for example, the treatment of premature infants, which has reduced mortality rates, but increased the rate of disabilities in this population. These are children who require a comprehensive array of services for a lengthy period of time beginning early in life.
Strides in the treatment of AIDS have created a new problem for those involved in the fight against the disease. Cyril C. Colonius, executive director of Community AIDS Resource and Education Services of Southwest Michigan in Kalamazoo, Michigan, reports: "With the decline in the AIDS death rate for three years in a row, it's harder to help people understand that AIDS is not over."
Jan Koopman, project manager of HIV/AIDS Services, Inc. in Grand Rapids, Michigan, agrees: "It is harder to get support for HIV services because the general perception is that AIDS is no longer a crisis in the U.S." Nancy Ryan, deputy director of the Pierce County AIDS Foundation in Tacoma, Washington, defines that organization's greatest challenge as "facing the daily perception, that because of new medications, the epidemic is over."
The Fox Chase Cancer Center in Philadelphia, Pennsylvania, has found that medical advances can create entirely new needs. Explains vice president for institutional advancement Sandra W. Weckesser:
Although Fox Chase's nationally-recognized Prevention Research Campaign has reached its original goal of $38 million, the real work of the Research Institute for Cancer Prevention has just begun. The resource requirements of the Institute have expanded in ways unforeseen and unpredictable at the outset of the campaign. We now have an urgent need to establish centralized facilities in two areas—genomics and bioinformatics. ... Both facilities are critical to our efforts to realize the full potential of cancer prevention.
Special Challenges—Posed by Bureaucracy
Efforts to ensure the quality of care pose another problem. Dr. Phil Thuma, executive director of the Macha Malaria Research Institute in Dillsburg, Pennsyvania, names "administrative details—especially keeping up with the ever-increasing government regulations in the medical research area" as his greatest challenge. Dr. Marie E. Powell, president of Green Hill in West Orange, New Jersey, cites "continuing to comply with increased regulations and the voluminous amount of paperwork they require" as the hardest part of her job.
The nonprofits are not the only ones drowning in paperwork. Gerald H. Dessner, president of the William B. Dessner Memorial Fund in New York City, notes, "The demand for services for the emergency aid we provide to kidney dialysis and transplant patients has remained about the same or even lessened a bit in recent times. I do not think this is because the need is not there. Instead, renal social workers who write to us on behalf of their patients, are now covering more and more patients, and have less and less time for the necessary paper work."
Even medical professionals are not immune. Lois White and her colleagues in the Acoustic Neuroma Association "find that the medical community has less time to give to us, as they are faced with managed care issues, staffing problems and professional liability concerns."
Despite these challenges, the nonprofit's staffs and volunteers persevere. "Knowing what a difference we are making in the lives of the cancer patients and their families" motivates Craig Schaefer, executive director of Cancer Care Services in Fort Worth, Texas. "We are reaching 80% of the newly diagnosed cancer patients that meet our income guidelines—essentially, that means we have an 80% market share! Who wouldn't be excited about that?"
Audrey Gordon, president of the Progeria Research Foundation in Peabody, Massachusetts, finds, "It is extremely gratifying to be able to help a student in need of information for a school report, a Dr. with a Progeria patient, a family with a child with Progeria, and to give people the opportunity to help. It is also wonderful to get praise about the work we are doing, which we are very proud of!"
Alicia McAuliffe, president of the Circle of Life Camp in Loudonville, New York, is inspired by "helping the children and actually seeing that our camp does help improve the lives of children with diabetes. Personal satisfaction—I think all of our volunteers and staff would say the same!!"
Chuck Martin, executive director of the Kenny Rogers Children's Center in Sikeston, Missouri, takes pride in the number of children his organization has assisted. "Over the years," he notes, "our Center has literally helped thousands of children with special needs attend public school, function more independently, and gain the confidence they need to lead more active and productive lives. The best part of my job is seeing the fantastic staff that we have positively impacting the lives of some very special children."
"Every once in a while," reports Sean Casey Venable, chair and operating officer of P.L. Active in Washington, D.C., "a client thanks us for helping them through a very tough time. [That] makes it all worthwhile."
As Sharon Gacki, executive director of the Amyotrophic Lateral Sclerosis Association in Saint Louis, Missouri, says, "We can and do make a difference."
- Aldridge, Robert S., chairman, Tom & Marye Kate Aldridge Charitable and Educational Trust, Oklahoma City, Oklahoma. E-mail to Suzanne E. Coffman, January 8, 2001.
- Baker, Robbie, director of development, American College of Rheumatology Research and Education Foundation, Atlanta, Georgia. E-mail to Suzanne E. Coffman, January 11, 2001.
- Barber, Elizabeth, executive director, American Lung Association of Mississippi, Ridgeland, Mississippi. E-mail to Suzanne E. Coffman, January 8, 2001.
- Benetech Initiative. "Project Summaries."
- Burns, Janet, vice president, development and community relations, Clovernook Center for the Blind, Cincinnati, Ohio. E-mail to Suzanne E. Coffman, January 10, 2001.
- Cech, Thomas R., Ph.D., president, Howard Hughes Medical Institute, Chevy Chase, Maryland. E-mail to Suzanne E. Coffman, January 8, 2001.
- Chun, Danny, director, media relations, Alzheimer's Association, Chicago, Illinois. E-mail to Suzanne E. Coffman, January 17, 2001.
- Colonius, Cyril C., executive director, Community AIDS Resource and Education Services of Southwest Michigan (CARES), Kalamazoo, Michigan. E-mail to Suzanne E. Coffman, January 16, 2001.
- Conrad, Dr. William C., president, GANSU, INC., Warner Robins, Georgia. E-mail to Suzanne E. Coffman, January 12, 2001.
- Cookman, Darrell, communications coordinator, Cornelia de Lange Syndrome Foundation, Avon, Connecticut. E-mail to Suzanne E. Coffman, January 23, 2001.
- Dessner, Gerald H., president, the William B. Dessner Memorial Fund, Inc., New York, New York. E-mail to Suzanne E. Coffman, January 7, 2001.
- Fitzek, Brian, associate director of communications, American Lung Association of Maryland, Timonium, Maryland. E-mail to Suzanne E. Coffman, January 9, 2001.
- Fruchterman, Jim, president, Benetech, Moffett Field, California. E-mail to Suzanne E. Coffman, January 6, 2001.
- Fulton, Shari, national vice president and director of medical education, P.R.Y.S. Foundation, Inc., Folsom, California. E-mail to Suzanne E. Coffman, January 9, 2001.
- Gacki, Sharon, executive director, Amyotrophic Lateral Sclerosis Association, Saint Louis, Missouri. E-mail to Suzanne E. Coffman, January 11, 2001.
- Gorden, Audry, president, The Progeria Research Foundation, Inc., Peabody, Massachusetts. E-mail to Suzanne E. Coffman, January 12, 2001.
- Guidone, Heather C., director of operations, Endometriosis Research Center, Delray Beach, Florida. E-mail to Suzanne E. Coffman, January 6, 2001.
- Hamilton, Mary, development assistant, DebRA of America, New York, New York. E-mail to Suzanne E. Coffman, January 11, 2001.
- Harris, Trudy, director, research and public relations, the Lynne Cohen Foundation for Ovarian Cancer Research, Santa Monica, California. E-mail to Suzanne E. Coffman, January 6, 2001.
- Havlicek, Michael, president, ALS Association, Calabasas Hills, California. E-mail to Suzanne E. Coffman, January 22, 2001.
- Heyison, Marc, president/co-founder, Men Against Breast Cancer, Rockville, Maryland. E-mail to Suzanne E. Coffman, January 10, 2001.
- Hodgson, Dave, vice president, Illinois Chapter—Huntington's Disease Society of America, Chicago, Illinois. E-mail to Suzanne E. Coffman, ca. January 8, 2001.
- Hodin, Ali, director of programs; Mary Clare Lynch, director of administration; Bonnie Osinski, director of development; and Mary P. Walker, associate director of development, The Glaucoma Foundation, New York, New York. E-mail to Suzanne E. Coffman, January 18, 2001.
- Kansky, Gail, president, National CFIDS Foundation, Inc., Needham, Massachusetts. E-mail to Suzanne E. Coffman, January 5, 2001.
- Katzke, Mary, director, Affinity Films "Between Us Project," Anchorage, Alaska. E-mail to Suzanne E. Coffman, January 6, 2001.
- Keener, Amy, community relations coordinator, the Leukemia & Lymphoma Society, Dallas, Texas. E-mail to Suzanne E. Coffman, January 10, 2001.
- Koopman, Jan, project manager, HIV/AIDS Services, Inc. (HAS), Grand Rapids, Michigan. Fax to Suzanne E. Coffman, January 8, 2001.
- Knowles, Kathi, executive director, Health Information Network, Seattle, Washington. E-mail to Suzanne E. Coffman, January 17, 2001.
- Ladd, Virginia T., president and executive director, American Autoimmune Related Diseases Association, East Detroit, Michigan. E-mail to Suzanne E. Coffman, January 11, 2001.
- Landversicht, Susan, director of development, National Reye's Syndrome Foundation, Bryan, Ohio. E-mail to Suzanne E. Coffman, January 12, 2001.
- Martin, Chuck, executive director, Kenny Rogers Children's Center, Sikeston, Missouri. E-mail to Suzanne E. Coffman, January 11, 2001.
- Massey, Jane, chief operating officer, March of Dimes, White Plains, New York. Telephone interview with Suzanne E. Coffman, January 17, 2001.
- McAuliffe, Alicia, president, Circle of Life Camp, Loudonville, New York. E-mail to Suzanne E. Coffman, January 8, 2001.
- McSpadden, Kaye, director of public and scientific affairs, Lowe Syndrome Association, West Lafayette, Indiana. E-mail to Suzanne E. Coffman, January 14, 2001.
- Messer, Sherrie, executive director, Southern Oregon Lions Sight & Hearing Center, Medford, Oregon. E-mail to Suzanne E. Coffman, January 8, 2001.
- Moore, Rebecca, executive director, ALS Association Evergreen Chapter, Bellevue, Washington. E-mail to Suzanne E. Coffman, January 16, 2001.
- Morton, Peter, vice president, Morton Cure Paralysis Fund, Minneapolis, Minnesota. E-mail to Suzanne E. Coffman, January 10, 2001.
- Murphy, Paul, president, International Society for Mannosidosis & Related Diseases, Inc., Baltimore, Maryland. E-mail to Suzanne E. Coffman, January 20, 2001.
- Naucke, Debbie, executive director, Delta Gamma Center for Children with Visual Impairments, Saint Louis, Missouri. E-mail to Suzanne E. Coffman, January 15, 2001.
- O'Leary, Delores M., director, Sarcoid Networking Association, Sumner, Washington. E-mail to Suzanne E. Coffman, January 9, 2001.
- Powell, Dr. Marie E. Powell, president, Green Hill, Inc., West Orange, New Jersey. E-mail to Suzanne E. Coffman, January 8, 2001.
- Remley, Karen, M.D., M.B.A., F.A.A.P., chief medical officer, Operation Smile, Norfolk, Virginia. E-mail to Suzanne E. Coffman, January 11, 2001.
- Ryan, Nancy, deputy director, Pierce County AIDS Foundation, Tacoma, Washington. E-mail to Suzanne E. Coffman, January 11, 2001.
- Schaefer, Craig, executive director, Cancer Care Services, Fort Worth, Texas. E-mail to Suzanne E. Coffman, January 24, 2001.
- Schlam, Ellie, public relations director, National Kidney Foundation, New York, New York. E-mail to Suzanne E. Coffman, January 11, 2001.
- Sheeran, John, chief executive officer, Tuesday's Child, Culver City, California. E-mail to Suzanne E. Coffman, January 8, 2001.
- Slaman-Forsythe, Mary, founder and president, Twin to Twin Transfunsion Syndrome Foundation, Bay Village, Ohio. E-mail to Suzanne E. Coffman, January 7, 2001.
- Spillane, Mary, director of communications and public education, Interplast, Mountain View, California. E-mail to Suzanne E. Coffman, January 12, 2001.
- Stanton, Bradley N., P.D.G., chairman, Gift of Life International, Inc., Glen Mills, Pennsylvania. E-mail to Suzanne E. Coffman, January 7, 2001.
- Stoxen, Craig C., executive director, South Carolina Autism Society, West Columbia, South Carolina. E-mail to Suzanne E. Coffman, January 8, 2001.
- Strawderman, J. A., Ph.D., director, Otter Creek Research, Inc., Springport, Michigan. E-mail to Suzanne E. Coffman, January 9, 2001.
- Switzer, Dave, marketing and public relations director, PKD Foundation, Kansas City, Missouri. E-mail to Suzanne E. Coffman, January 11, 2001.
- Tarver, Dr. Donald G., administrator, Pacific West Cancer Fund, Seattle, Washington. E-mail to GuideStar, January 9, 2001.
- Thuma, Phil, M.D., executive director, Macha Malaria Research Institute, Dillsburg, Pennsylvania. E-mail to Suzanne E. Coffman, January 8, 2001.
- Tyson, Mercer Tyson, director of development, AIDS Community Residence Association (ACRA), Durham, North Carolina. E-mail to Suzanne E. Coffman, January 7, 2001.
- Venable, Sean Casey, chair and chief operating officer, P.L. Active, Inc./Non-profit AIDS Services, Washington, D.C. E-mail to Suzanne E. Coffman, January 6, 2001.
- Weckesser, Sandra W., vice president for institutional advancement, Fox Chase Cancer Center, Philadelphia, Pennsylvania. E-mail to Suzanne E. Coffman, January 19, 2001.
- Wegner, Pamela, program director, community relations, The Serra Project, Los Angeles, California. E-mail to Suzanne E. Coffman, January 19, 2001.
- Weyl, Janie, president, Breast Cancer Alliance, Greenwich, Connecticut. E-mail to Suzanne E. Coffman, January 15, 2001.
- White, Lois V., executive director, Acoustic Neuroma Association, Cumming, Georgia. E-mail to Suzanne E. Coffman, January 10, 2001.
- Wootton, Jackie, M.Ed., president and executive director, Alternative Medicine Foundation, Bethesda, Maryland. E-mail to Suzanne E. Coffman, January 12, 2001.