Shani Weber, Local Groups & Outreach Liaison

Why did you volunteer to be the Local Groups & Outreach Liaison for the EDNF?

After working for years as a teacher and child development expert, I felt I had the skills to effectively teach individuals and the general community about Ehlers-Danlos Syndrome. Once diagnosed with EDS-Hypermobility type, I learned that there are many in the world who would benefit from knowing about this genetic disorder and I knew I was qualified to help in that effort. I volunteered with EDNF because it is the definitive organization for EDS.

What experience did you have to bring to the foundation?

I bring to EDNF experience as an early childhood special education teacher, an expert of early childhood development, special education advocate and a parenting coach. In these capacities, I have honed the skills of sharing information with an array of individuals, problem-solving ways for those with disabilities to live successfully, and working with others to make a difference. I have ample public speaking experience as well as having advocated for years for those with disabilities. I am experienced working with the medical community, schools, government agencies, and the general public. I have been able to use my knowledge of how to adapt the world for special children to better live with my EDS and I enjoy sharing that information with others living with this condition and with a community in which we live.

What do you want to achieve as Local Groups & Outreach Liaison?

I want to help those with and without EDS understand the condition and how to live with it. I also want to assist EDNF in being the source for information and resources about EDS. I do this through assisting with EDNF's message board on Inspire, assisting those with EDS in locating, starting, or running local support groups, and speaking as a patient advocate on issues related to EDS. Teaching, advocating, assisting, and supporting individuals touched by EDS is how I assist EDNF in its mission.

Mark C. Martino, Creative Director

Why did you volunteer to be the Creative Director for the EDNF?

I felt I could help EDNF by offering my decades of experience in nonprofits, marketing, publicity, graphic design and typography. My mother and her mother died without ever knowing what caused their joint and other problems, and I had no idea what was wrong with me until my diagnosis at age 43. EDNF literature was instrumental in getting that diagnosis and in providing the information I needed to live with EDS; I thought perhaps I could in return both help the foundation grow and help other families with EDS. I started first as typographer, became Design Director and then Creative Director.

What experience did you have to bring to the foundation?

In the late 1970s I went to work for nonprofit theaters in Houston during the daytime as publicist as well as graphic, set and lighting designer, and at night as a musician, music director and composer (and frequent actor). My first professional home was Main Street Theater, now in their 36th season, where I also spent two years as co-producer of Main Street Theater Junior, their first endeavor at a children's program. I moved to Stages Theater; as Publicity Director I helped them move from a tiny bayou basement into a custom-built space as an Equity company, Stages Repertory Theatre. I continued working there as computer manager/programmer and marketing/administrative assistant, and spent seven years as staff music director and composer, as well as a frequent set, lighting or sound designer. Along the way in the 80s and early 90s, I worked with many other nonprofits as well: Rice University; The Actor's Workshop; Equinox Theater; the Kodaly School in Guatemala City; Duchesne Academy of Houston; Gilbert and Sullivan Society of Houston; Texas Opera Theater; and even a short stint at Museum of Fine Arts, Houston as the signage designer and traffic coordinator for their first major international exhibition. As a co-owner, I helped produce and write for a few years with a small independent children's theater company, RAVE Productions. But injuries mounted and I gradually became unable to continue 12 to 16 hour work days; I took over a friend's graphic design and typography business, and spent most of the 90s working in Spanish and English for a handful of printing companies until I was diagnosed with EDS in 2000.

What do you want to achieve as Creative Director?

I want to continue EDNF's polished and professional look, maintaining the public image with a high design standard, producing the many publications of the foundation such as the Hinge, Loose Connections, and Medical Resource Guides, and bringing up-to-date, relevant information to both our members and our friends on our Web site, our Facebook page, and wherever and however else we can reach our fellow EDSers.