February 2001

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, theAIDS 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."