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Unless you have participated in the organization of an NTSA event or the planning of NTSA's future, you have probably taken advantage of her work without knowing much about Karen Bassiri's enormous contribution and role.

Karen comes from a very experienced background of raising money and managing programs for business, legal and arts-related non-profit organizations for the last 16 years. Working with NTSA has been a different challenge than her previous positions which dealt more with professional, legal and business issues. She remembers John Conrad, an endowment fund board member, telling her, "You're into life and death issues now."

Taking those words to heart, Karen has worked hard, often behind the curtains, to raise support for TS. Her responsibilities range from securing larger gift donations to handling direct mail and putting together publications such as the Annual Report and the Grandparents' Voice. Appeals for gifts, be it money or pro bono support, takes her all over the country. She is currently working with the Board to put together a new membership structure.

Karen loves her job because she "really really likes getting to know people, talking to them and making friends, and the reality of fund-raising allows that." She also enjoys the writing opportunities and joked, "I get to talk by mouth and paper." Her biggest challenge now is "to find people who are comfortable working with me to get major gifts in place," and to secure more publicity for TS.

In her spare time, she reads, spends time with her active son and daughter, and cooks Middle Eastern food for her husband and guests. Those of you who know her may be surprised to find out that the soft-spoken, modest vice president used to take kick-boxing lessons. "It's funny what parts of yourself you discover-- like my aggressive parts," she said.

Meet Barbara Witten:
President of NTSA
[From the Winter 1997 issue]

For active volunteers who participate in fund-raisers, board meetings, and other NTSA activities, Barb Witten with her endless enthusiasm and huge smile is a familiar face. The President of the organization travels to attend as many meetings and fund-raisers as she can, often forgoing weekends, to support the TS cause to the fullest extent possible.

Barb came to NTSA almost five years ago from the Easter Seal Society where she managed their fundraising program and produced the annual telethon on channel 7. She was hired by then NTSA President Clark Paradise to work as a consultant and took over after him in Feb. 1993. She handles oversight, all financial aspects of the organization, policy setting, fund development, and strategic planning in addition to showing support at almost every NTSA event.

Despite her heavy workload, she enthuses "[being] on the cutting edge of the research scientific community... knowing the difference that we make in the day to day lives of the individual children, and ...bringing isolated families together," make it all worthwhile. She adds, "it's [also] a gift to be able to work with such a talented staff. Each is prepared to make enormous personal sacrifices to meet the challenges that we face everyday." In the coming years, Barb would like "to land TS on the minds of the public conscience, and build an effective local family support network to meet family needs... whether they live in Los Angeles or in rural community."

This mother of two children, a 21-year-old son and a 15-year-old daughter, credits her engineer husband, Randy, for being "a full partner throughout my non-profit career." NTSA is lucky her family is "self-sufficient, and things continue at home without missing a beat," for it lets her devote the time and energy that enabled her to shape the organization into what it is now.

Meet Vicky Whittemore:
VP for Medical and Scientific Affairs
[From the Fall 1996 issue]

After a four year stint as the chairman of the NTSA board, Vicky gave up a teaching career at the Univ. of Miami in Florida to devote her full attention to NTSA as vice president for medical and scientific affairs. Vicki handles all medical aspects of the organization. Often having to wear different hats at once, she is in charge of overseeing the research grants program, keeping up with legislation that impacts TS, educating professionals and TS families, and organizing fund-raising projects targeted at pharmaceutical exhibits. Whether she is presenting at medical conferences and exhibits, working on RESOURCES, a newsletter geared to professional, or contributing articles to PERSPECTIVE, she works hard to get the information across to everybody. She is especially excited when she "can explain research to the membership and what the research dollars mean for them.

The trained neurobiologist says that finding answers to difficult situations is the most challenging thing about her job. Vicki relates an incident when she was able to help a family in Michigan obtain Vigabatrin to stop infantile spasms within a few hours. "I've done my job when I've helped someone directly," she says in her gentle manner.

Despite her busy schedule, this mother of two boys, Andy 6, and Jesse 10, likes to work out, play the piano, read biographies of women who met significant challenges in their lives, or play with her kids. She emphasizes that "NTSA is here to help, and you should never be afraid to call for assistance, advocacy, information...whatever we can do to help you."

Meet Donna Bayes:

Director of Information and Resources
[From the Summer 1996 issue]

Between attending her youngest son's high school sports games and taking care of the various duties at NTSA, Donna Bayes' day is a whirlwind of activities. When she came to NTSA five years ago from a high pressure job as a grant specialist at Prince Georges' Community College, this mother of five was hoping for a more relaxed atmosphere with time to pursue her hobbies such as doll-making, traveling and participating in her children's activities. The most senior member of the current staff, however, soon found herself taking on major roles in the organization. When asked whether it's her or the job, she gave a wry laugh and admitted, "That's probably true. I've always done everything. I was the room mother, brownie mother, and cub scout den mother."

Donna holds three important jobs at NTSA. First, she is the editor of Perspective, the national NTSA newsletter that members receive quarterly. While she claims that she "Started it because nobody else wanted it," she has succeeded in breathing life into the newsletter. "It used to be mainly for fund-raising purposes, but I wanted it to be a warm and fuzzy kind of newsletter," she says.

Second, she is currently developing a state resource sheet for TS families that would list local resources such as school advocacy groups and doctors.

However, her most important role is as the director of information and resources. This means that when you dial the NTSA 800 number with questions and concerns about TS, the first person you will likely speak to is Donna. Not only does she answer your questions, she does it cheerfully with a sympathetic ear, ready to listen to any problems you might want to share. She says, "I really enjoy talking to families, and I feel their frustrations when we don't have answers to their questions immediately... I just want to make the hurt go away." She strongly emphasizes that "If anybody has questions, concerns... if they need to vent frustrations or need to just talk, absolutely call the 800 number. Don't be afraid to use [it], you're not bothering us." So why not pick up the phone and say hi?