A social worker, Becky Huntley, from Good Samaritan Mental Health Center who was also involved with Good Samaritan Children’s Therapy Unit, contacted clients about forming a support group for parents of children with Spina Bifida and adults with Spina Bifida. We met monthly at Good Samaritan Hospital and scheduled monthly speakers. Debbie Myrvik and Gloria Olson obtained a grant from the local Kiwanis Club to attend the Spina Bifida Association of America (SBAA) Conference in San Jose, California, in 1981. Initial members of the support group were Debbie & Loren Myrvik and Ronda & Dave Henry, two new sets of parents, along with Gloria Olson, an adult with Spina Bifida.
In 1984 we approached the Seattle chapter, the Spina Bifida Association of Puget Sound, about forming umbrella groups around the state, including one in the Pierce county area of Washington. We were not interested in supporting groups in other parts of the state, so we incorporated in February 1985 as the Evergreen Spina Bifida Association. Later, they asked us to consider merging, but they decided not to pursue it after meeting with our president. They went on to support wheelchair sports programs with their funds. They eventually folded after Evergreen Spina Bifida Associated had become a nonprofit organization and offered us their library.
Our first President was Robert Belflower of Lakewood who had a daughter with Spina Bifida. In the fall of 1985, Gloria Olson, an adult with Spina Bifida, was asked to attend the SBAA Midyear conference in Chicago to be trained as an interviewer for the SBAA Adult Survey. She later interviewed female women with Spina Bifida and the study was published by the SBAA. For the Spina Bifida Association of America Conference in Orlando, FL, in 1993, Gloria obtained a grant from the State of Washington’s Division of Developmental Disabilities (DDD). We received a further grant from DDD through PAVE to build the Evergreen Spina Bifida Association.
Gloria Olson, as president, attended the SBAA conferences in Phoenix, AZ (1989 and 1996), Orlando, FL (1993), Washington, D.C. (1995) and in Milwaukee, WI (2000). She raised funds to attend these conferences by sending letters to friends, relatives, and businesses.
In 2000, we applied for a grant from the Muckleshoot tribe in Auburn, WA and received a grant of $5,000. Linda Johnson (now Bailey) went to their awards luncheon to receive the check and thank them.
Evergreen Spina Bifida Association often had Christmas parties and summer picnics for support. We maintained a library of many of the SBAA publications and other pertinent materials. We also kept a resource list for referral of organizations serving people and their families with Spina Bifida.
In 2002, ESBA was at a crossroads. Our president, Gloria Olson, was in failing health and was tired of the leadership burden. We had 7 paying member families, and they were disheartened. In November 2002, Patti Logan agreed to take the leadership role and was elected president; Michele Hopkins became the vice president, Ronda Henry and Annette Zweig-Donham were elected to the posts they had held the previous year, secretary and treasurer respectively. The group got an immediate shot in the arm, however, when Evergreen Spina Bifida Association was selected in December 2002 by Safeway as their Charity of Choice. We received many thousands of dollars from donations of Safeway customers who gave us their spare change, and one large donation from former Seattle Seahawks wide receiver Steve Largent! Evergreen Spina Bifida Association now had money in the treasury and very few members. It was critical for us to find new members and new ways to enhance the lives of people with Spina Bifida to fulfill our mission.
We started by printing 5,000 ESBA brochures. Patti Logan was a member of the Folic Acid Education Council of Washington State at that time and through contacts in that committee obtained a list of all the pediatricians and nurse practitioners in the state of Washington. Brochures and letters of introduction for ESBA were sent to over 1,000 professionals during 2003. None of them responded. We contacted the Center for Children with Special Needs at Children’s Hospital who gave us all the names and addresses of the public health nurses in Washington and the staff of Seattle Children’s Hospital which developed new avenues of exposure to speaking engagements and added hundreds to our email address list of contacts.
Then we looked at the map on the SBAA web site and realized we were the only SBA in the northwest! We sent brochures to the list of people who had contacted Spina Bifida Association of America and who lived in WA, OR, ID, MT, and AK. These people showed interest and many of them became members. Our membership started to grow slowly at first, but steadily, as we reached out through a website, emails, and a weekly open yahoo chat room. We presented materials about Spina Bifida at fairs and conferences within our 5 state area. The growth outside of western WA was accelerated when Ed Kennedy contacted Patti about starting an SBAA-affiliated group in Spokane, WA, and the Evergreen Spina Bifida Association core group voted to support any member of ESBA who wanted to start a “cluster” or local support group. ESBA would pay for all related expenses (within some limits) if one of our members would advertise and hold regular meetings of people in their area. This “cluster” idea became our way of reaching out and supporting the individuals in other states, along with monthly computer messages and quarterly newsletters.
By 2004, ESBA had members in all of our 5 states, and we were again chosen as a Safeway Charity of Choice for the month of May. We increased our scholarship amount from $250 to $1,000 and awarded scholarships during 2004 to Amanda Henry and Brigid Gallagher. We opened an Equipment Fund to help members with buying and repairing of mobility equipment. We bought 4 laptops to be used for loaning to members for six months at a time while recuperating from surgery or for cluster building. We also initiated ESBA Grants to groups or individuals who would partner with us in fulfilling our mission. In 2004, we awarded Children’s Hospital and Regional Medical Center in Seattle with $500 for their Holiday Party and they sent our brochures to all those who were invited. Ed Kennedy agreed to help Patti lead the group. They were elected co-chairs with Brian Knowles elected Vice President, Michele Hopkins, secretary, and Annette Zweig-Donham, treasurer, in August 2004.
ESBA has developed partnerships with some interesting organizations. We were chosen by Future Business Leaders of America (WAFBLA) as one of their charities for 2004-2005. Through FBLA students, our “What Is Spina Bifida?” Power Point presentation was duplicated and distributed widely. We were also chosen by a Barry Manilow fan club, Melting for Manilow (MLM) as their charity for 2005. (Several of the members are individuals with Spina Bifida or parents of children with Spina Bifida.) We finished the year 2004 with 70 members, a 10-fold increase within 2 years.
Our plans for 2005 were expansive. We elected our first Advisory Board in December to help the co-chairs with the direction and planning of the future of the group. We hope to expand our clusters to 20+ and develop at least one in each of our states. We plan to continue our cooperation with Madigan Hospital and Seattle Children’s Hospital and expand our connections to Shriner’s Hospitals in Portland and Sacred Heart Hospital in Spokane. All our members are invited to meet at Camp Prime Time for a weekend in July for relaxation and developing friendships, developing long-range plans for the organization, and Board Member Training. Our members will be speaking at two regional conferences, and we will have exhibits at perhaps a dozen sites. We hope to reach the high mark of over 100 members. We plan to build support groups throughout WA, OR, ID, MT, and AK.
There are a lot of unsung heroines (and even some heroes) who should be acknowledged. Many people have put in efforts to keep the ESBA afloat in the early years. A newsletter and brochure were created and distributed for many years, much of the time through the dedicated effort of Ronda Henry and her daughter Amanda. Karen Mattick also put time in publishing the newsletter. Amanda Henry also put much effort into cataloging the library. Justin Renney helped with the brochure and Brigid Gallagher helped with luggage and other efforts in our trips when she was a young girl. She and a friend wrapped Christmas presents for the parties, as did Ronda and Amanda Henry. Annette Zweig-Donham and Gloria Olson shopped for Christmas gifts; Annette has bought the gift cards many times for the Christmas parties. Linda Bailey organized the files, and Ronda has updated them as well.
Note: At the request of the national Spina Bifida Association we changed our name to the Spina Bifida Association of Washington State in 2008 and our service area is restricted to that state. At last count we have over 300 members and new members are joining every month.