The MLD Foundation was formed as a result of the journey taken by Dean & Teryn Suhr of West Linn, Oregon (a journey not unlike so many other MLD suffering families). Their oldest daughter, Lindy, started showing behavioral problems in 1988 at approximately age 8. After nearly seven years of misdiagnosis she was finally properly diagnosed with Metachromatic Leukodystrophy in 1995. At that time she was too far progressed to have any treatment, and her two younger sisters were tested for the disease. Her middle sister, Jclynn, was free from the disease - which was a blessing because their youngest sister, Darcee was affected by the disease. Jclynn was the bone marrow donor for Darcee. Darcee died in December 1995 of complications from the anti-rejection drugs interacting with her MLD disrupted metabolic system.
The Suhr's are blessed by the time they still enjoy with Lindy - but do not want any family to suffer alone as they did - not knowing about MLD early enough, not knowing who to ask for more information, and not knowing what to expect next as the disease and therapies ran their course. Dean set up the MLD Family as a world-wide e-mail discussion group shortly after Darcee's death.
That group grew in numbers and relationships for several years when the Suhr's decided to organize and host the first MLD Family meeting, MLD'2000, in conjunction with Dr. Bill Krivit in Minneapolis, Minnesota in the fall of 2000. 30 people and a half dozen doctors, researchers and care providers attended this first ever gathering to learn more about MLD and the people it affects. In May 2001 the Suhr's formed the non-profit MLD Foundation as a public benefit charity in the state of Oregon. The MLD Foundation then applied for and received 501(c)(3) tax exempt status from the IRS. Subsequently, MLD'2002 was held in the fall of 2002 in Pittsburgh, Pennsylvania.
The MLD Family web site, which is the precursor to this MLD Foundation site, was launched on September 11, 2000. You can see an archive of that site here here. The MLD Family Discussion List was started in 1999, has over 150 members as of the fall of 2005 from over 15 countries and has been the source of several thousand messages of support, information and discussion between the MLD Family members.
Dedication
The MLD Family and MLD Foundation dedication can be seen here.
Current Status - The Suhr Family - April 2006
At this time (spring 2006), Jclynn & Kevin are into their second year in Florida and are the parents of three (grandkids! - all under 3), Christopher, Madilyn, and Emma (born May '05). Lindy has shown some decline over the past year. After being at one seizure a year (or so), she started having weekly seizures in the spring of 2005. We have been adjusting her medications to try to eliminate the negative side affects of the previous combination of meds and to eliminate the weekly seizures but after nearly a year of tinkering we have accepted that this just might be the state current of the disease. She is much more animated and "present" these days because we have simplified her drug regiment, but the seizures remain. She had a MRI in 2003 and we compared it to her 1997 films. While we could see significant changes in the white matter, her mental processing remains relatively stable. We remain concerned about her lower cortex being more involved (breathing, temperature, basic life functions). She remains very mobile, talks responsively to others but not much to us. She requires 1-on-1 supervision and loves to be on the periphery of any sort of activity. She lives in a group home with lots of active peers during the week and participates in a day program. She is home each weekend with us. We remain blessed.
A couple of articles about the MLD Foundation and the Suhr family: