Adult Issues Committee Notes
TS Alliance Board of Directors Meeting
Doubletree Hotel, Atlanta Buckhead
Friday, October 21, 2005
In attendance:
Adult Issues Committee: Carol Michael (standing in as chair), Cathy Krinsky and Chris
Sheffield. A quorum was established.
Board Members: Andy Bott, Will Cooper, Craig Elias, Terry Elling, Jeffrey Hargreaves, Georgia
Johnson, Fred Linder, MaryJane Mudd, , John Steenman and Rob Thurston.
Staff Members: Nancy Taylor (CEO), Kari Carlson, Lee Dachi, Jennifer Dotson, Jaye Isham,
Will Tolentino and Vicky Whittemore.
Guests: Mark Carroll.
Update on Adults Journal – Planning and Timeline
Vicky Whittemore reported that the development of the Adult Journal began with the Adult
Advisory Committee and Linda Creighton. It includes topics important to our adult constituency including insurance, mental health, information about disability, all TSC manifestation including neuropsychological, among others. The Adult Journal has been through several revisions, including edits by Kathy Groves (chair of the Adult Issues Committee) and Nicole Seefeldt
(chair of the Adult Advisory Committee).
The next step is the piloting phase. There have been 18 adults of varying abilities and life circumstances that have been contacted by Nicole Seefeldt for their approval to participate. The pilot will be a review, not for editing, but for content and usage. The Adult Journals will go out next week and the pilot will last one month. The Adult Journal will be published at the beginning of next year.
The document for the most part is in Word and will be printed quickly. The charts and graphs are coming from the same person that designed the other Journal.
Update on What Community Alliances Are Doing to Incorporate Adults with TSC
Kari Carlson reported on the progress Community Alliances were making in incorporating adult involvement. At the March leadership training in Washington D. C., there was great discussion about the importance of adult issues being incorporated in programs and activities on the local level. Jeffrey Hargreaves challenged every Community Alliance Chair to recruit and add adults

to their leadership teams. To date, eight Community Alliances had adult representation on their leadership teams and three more have parents of adults involved on their leadership teams. This is just the beginning.
The newest Community Alliance, the TS Alliance of the Heartland (covering Iowa and
Nebraska), was started on October 9 in Des Moines, IA. The leadership team from its inception includes co-coordinators of adult initiatives.
Finally, Duane Diemert, co-chair from the TS Alliance of the Pacific NW, has been named by the Adult Advisory Committee as the liaison to Community Alliances. His role will be to keep adults issues at the forefront of Community Alliance discussions. Duane will have a regular role during the quarterly Community Alliance conference calls as well.
Brainstorm on Ideas to Get More Adult Involvement in the Local Community
Carol Michael led the discussion. All agreed it is important to find out what the needs are and how we better address them. Janie Frost shared that she had been so impressed with the LAM
Foundation and their support services. She suggested contacting them as they may have already conducted a survey.
ACTION ITEM: Doug Loftus offered to check and see the LAM Foundation had done a survey and what the results were. He will also gather anecdotal information from them.
Craig suggested that we look again at an adult survey for the TS Alliance.
Vicky suggested that we start with groups of adults and shared that one of the ways that we are beginning to open dialogue is through Town Hall Meetings. The adult list serve has been an active community that has been the foundation for the initial Town Hall meetings. The first
Town Hall meeting was open discussion on what adults would like to see, brainstorming on the
National TSC Conference and adult social activities and forming a base group through this forum that would grow out to the community at large.
The next Town Hall meeting is set for January. One of the suggestions made on the previous conference call was to add a guest speaker to see if that would attract more participants. Carol
Michael encouraged Nancy Taylor and other board members to participate in the next Town Hall meeting. Nancy stated that she would be delighted to participate and the only reason that she had not participated previously is because she had another board meeting scheduled on the same day at the same time.
Carol Michael noted that the organization was founded for parents of children. The organization has accomplished incredible goals and become more professional. With that growth, constituents have stayed involved and now their children are growing up. The first underserved population in our organization is adults. Their issues will come up again as we look at this as systemic challenges and changes for addressing the needs of other underserved populations. The fact that we are bringing in newer constituencies speaks to the success of the organization.

There was discussion on the tremendous variability of TSC and the impact on parents of small children when seeing severely affected adult. On the flip side, Vicky shared that parents seeing a normal functioning adult also offers great hope.
Some of the important ways that we can impact adults is to provide a way that they are able to meet and network. Janie Frost commented on the Midwest Regional TSC Conference that she chaired and how important the impact of network was to adult attendees. She also shared that it is a major focus of the National TSC Conference where we can also get feedback about how to better serve the needs and get involvement of adults.
ACTION ITEMS: Craig again encouraged putting an adult survey on the agenda for the next Adult Issues Committee meeting. Kari Carlson added that another important agenda item for the Adult Issues Committee is how to utilize the National TSC Conference as a springboard to greater adult involvement.
Identify Adult with TSC as Board Prospects and How We Cultivate Their Involvement
There are approximately 3-4,000 marked adults in the TS Alliance database. A couple of suggestions were made as to how best to reach this population:
1.
Email blast to this group highlighting the conference and ways to them involved.
2.
Perspective is the most widely read piece of information and Craig encouraged a call for adult nominations specifically in the magazine.
Kari Carlson emphasized that we need to find a way to thoughtfully and carefully cultivate board prospects. Craig Elias shared that this exists through the Adult Advisory Committee. However,
Vicky shared that sometimes it is difficult for “high functioning” adults who are extremely passionate but face financial difficulties to meet the monetary obligations of board members.
This has been off-putting in some cases.
Craig Elias shared the adage, “work, wealth, wisdom.” He suggested that perhaps a certain number of spots on the board might not have to meet financial requirements. Fred Linder echoed that we need a good balance of board members to meet the short and long-term needs of the organization. Additionally, he shared that 20% of nominees to date are adults, compared to 1 person last year and zero the year before that.
Carol Michael shared that we have made huge progress in this area. It is much different to be on a committee as opposed to the board. Some of the nominees may never have been on a board and don’t know the expectations.
Carol Michael made the following motion.
MOTION: Jaye Isham and/or additional staff to write email blast to adults from Raiser’s
Edge (TS Alliance database) for the purpose of updating their information, expressing interest in serving on the board or serving in volunteer capacity on a committee of the board.
Cathy Krinsky seconded. All approved.

Vicky Whittemore added that it would be important to do a mailing after the email as not everyone has email. Rob Thurston suggested that if the email blast was successful, we move forward with a mailing conveying the same information.
Carol Michael made the following motion:
MOTION: If we have positive response from the email, we move forward with a mailing to all adults in Raiser’s Edge (TS Alliance database).
Cathy Krinsky seconded.
Craig added that the goal should also be to gather increased knowledge about this population.
Rob Thurston suggested that we also send information to the list serve as some of the members are not in the TS Alliance database.
Carol Michael moved to approve the minutes from the last meeting. Cathy Krinsky seconded. All approved.
Other Business
Carol Michael wanted to review two action items from the previous minutes.
1. Set up a separate call to address chain of command for Kathy, Nikki, Kari and Nancy.
There will now be a monthly call between Nicole Seefeldt and Nancy Taylor. This arrangement was facilitated by Kari Carlson in talking with both Nicole Seefeldt and Nancy Taylor.
2. Advocate for providing lifespan medical care in established and new TSC Clinics.
Carol Michael shared that most of our clinics are pediatric in nature and is there anything that we can do. Vicky Whittemore shared that the timing is perfect, as we are getting ready to implement the clinical database to follow individuals throughout a lifetime. Jo Anne Nakagawa is now on the TS Alliance staff and charged with overseeing and being the liaison from the TS
Alliance to all clinics. This continuity of care issue is a priority for the clinics subcommittee.
Continuity of care could mean extending the clinic to adults or referral to other physicians if a clinic ceases care at age 18. A lengthy questionnaire to clinics has been prepared and will be sent shortly. It addresses many concerns including age range of patients, all physicians involved in the clinic, insurance accepted, social worker available, among others. This is going to give the
TS Alliance a much better handle on what clinics are doing. TS Alliance needs to gather the information to understand is we need to expand services.
ACTION ITEM: Vicky Whittemore and Jo Anne Nakagawa will glean information on continuity of care from the survey and share the information with the committee.
Chris Sheffield asked if we network with other agencies that have dealt with similar issues.
Vicky commented that when the first clinic criteria were developed we did get good feedback from Neurofibromotosis and Cystic Fibrosis organizations about how they handled this. Nancy
Taylor shared that she and Vicky will be visiting with the PKD Foundation about how to better partner. Another suggestion was to inquire with the Epilepsy Foundation.

As time for the committee meeting had elapsed, Carol Michael made a motion to adjourn. All approved.