2017 Volunteer Leadership Training Review

Volunter Leadership Training Review

March 2, 2017

We were joined by approximately 50 volunteer leaders at the 2017 Volunteer Leadership Training in Washington, DC. This review is a reminder for those who were in attendance, and an overview for those unable to join us in DC. It is intended for TS Alliance leadership volunteers. If you have questions on any of the content, please contact Christen Bell at cbell@tsalliance.org.

TS Alliance President and CEO Kari Luther Rosbeck gave a brief welcome to the group to kick-off the training.

Transition and Transition Tools

For this session we were joined by guest speakers from The Arc, Mass Mutual and Child Neurology Foundation. Each presenter shared their resources for transition age offered by their organization or company.

Trudy Jacobson, Senior Executive Officer, Development and Marketing with The Arc gave a thorough presentation on The Arc and the TS Alliance partnership as well as resources offered to the TSC community. Her presentation can be downloaded here.

Stephen Hodson, Financial Services Representative at MassMutual provided an overview of the services offered by MassMutual. For information regarding guardianship and special needs trusts, please contact Stephen at StephenHodson@financialguide.com.

Dr. Larry Brown, Chair of Transition Project Advisory Committee for Child Neurology Foundation, gave an overview of medical transition that can be accessed here. Questions on transition can be directed to Stephanie Mucha at smucha@childneurologyfoundation.org or www.gottransition.org.

Patient Focused Drug Development

Gabrielle Rushing, PhD Candidate, Vanderbilt University and TS Alliance intern, presented on Patient-Focused Drug Development (PFDD). Click here to view her presentation and contact her at grushing221@gmail.com with any questions. You can also read the cover story about the PFDD in the Spring 2017 issue of Perspective.

Access and New Partnerships

The following partners presented their resources and information regarding access programs and community support. Not all are able to share their presentations, but if you have specific questions, we can reach out to the presenters below.

  • Alice Mead, JD, Vice President, U.S. Professional Relations, Greenwich Bioscience (Click here for GW resource materials.)
  • Cathy Jackson, Director, Advocacy Relations, Mallinckrodt Pharmaceuticals
  • Kristi Lengyel, Director of Patient Advocacy, UCB (Click here for patient resource information.)

Website Management

Christen Bell, TS Alliance Community Outreach Manager, shared the desire to train chairs in managing their Community Alliance webpages on the new website. Jaye Isham, VP of Communications Strategy at the TS Alliance, showed the group what it would look like to have access and make changes to their page. With 37 Community Alliances across the nation, and high hopes to continue growing our reach, it will be more effective to have individuals manage their specific groups so that the information can be up-to-date. If the chair is uncomfortable making web edits, all updates and information can be sent through Shelly.

We will be moving forward with a trial period for 3-5 chairs who might be interested in managing their page, and will gradually increase the number.

Supporting Your Local TSC Community

Shannon Grandia, Adult Regional Coordinator and TS Alliance Volunteer, shared a visual of the newsletter she sends out to her region. The newsletter includes upcoming events, stories, information shared by the TS Alliance, and more. She is happy to assist any chairs interested in pursuing the newsletter idea for their community and can be reached at grandia@verizon.net.

Christen Bell introduced the newest way to host a virtual educational meeting. The TS Alliance has a GoToMeeting account for chairs to host webinars for their local TSC communities. Reminder: Community Alliance Chairs are required to hold two meetings or gatherings a year. A webinar can count as one of them! If you are interested in hosting a webinar as an educational meeting, please contact Shelly at smeitzler@tsalliance.org.

Dena Hook, TS Alliance VP of Outreach, discussed the current need for Dependent Adult Transition Resource Coordinators who help families navigate the needs of dependent adults. If you know someone in your community who might be a good fit, please contact Dena at dhook@tsalliance.org.

Step Forward to Cure TSC Initiatives

April Cooper, Director of Special Events and Corporate Partnerships and Gail Saunders, Associate Director, National Walks and Community Campaigns, presented on the desire for collaboration among chairs and walk chairs and gave an overview of walk fundraising. Their presentation can be found here.

Eternal Flame Society

For links to the documents provided by Chair of the Endowment Board Doug Loftus, use the title links below.