How it all started...
In 1984 the doctors from Riley Children's Hospital in Indianapolis, Indiana were researching Pelizaeus-Merzbacher Disease within the Daviau family. They had planned to have a sit down with the family later that year to discuss what all they had learned about PMD from their research. However, in January of 1984 Patti Daviau saw a news article that ran in the local paper that spoke of a family in Illinois that had three sons with this rare disease. She was left a little confused by it because the article stated "Only 20 cases of this ailment, Pelizaeus-Merzbacher disease, have been documented through the world." Patti had three sons of her own and knew of more than twenty documented cases of PMD within her own family. So, Patti set out to find the family that the article was written about, and was successful. When she found the family that the article spoke of she learned that they were in contact with a few other families as well. Patti spent some time reaching out to these other families and getting to know them. She then took this new information back to her doctors and asked if they would mind if the other families attended the sit down they had planned. The doctors agreed so late in 1984 they had the first unofficial PMD Family Support Conference. After meeting with the doctors the families spent time getting to know one another, bonding, and sharing the ups and downs of living with this rare disease.
In 1984 the doctors from Riley Children's Hospital in Indianapolis, Indiana were researching Pelizaeus-Merzbacher Disease within the Daviau family. They had planned to have a sit down with the family later that year to discuss what all they had learned about PMD from their research. However, in January of 1984 Patti Daviau saw a news article that ran in the local paper that spoke of a family in Illinois that had three sons with this rare disease. She was left a little confused by it because the article stated "Only 20 cases of this ailment, Pelizaeus-Merzbacher disease, have been documented through the world." Patti had three sons of her own and knew of more than twenty documented cases of PMD within her own family. So, Patti set out to find the family that the article was written about, and was successful. When she found the family that the article spoke of she learned that they were in contact with a few other families as well. Patti spent some time reaching out to these other families and getting to know them. She then took this new information back to her doctors and asked if they would mind if the other families attended the sit down they had planned. The doctors agreed so late in 1984 they had the first unofficial PMD Family Support Conference. After meeting with the doctors the families spent time getting to know one another, bonding, and sharing the ups and downs of living with this rare disease.
|
It was during this time that the thought that this type of a get together needed to happen more often was really cemented within Patti. She watched her family, who had already formed their own support system due to having an extensive family history of PMD, with the other families whom had less contact with other PMD boys and their families. It took a while for it to all really come together and materialize though, the first official PMD Family Support Conference didn't take place until the fall of 1990. However, the families who had met in 1984 stayed in contact and continued to offer support to each other when and where possible. During the years between that 1984 meeting and the 1990 PMD Family Support Conference Patti, as well as the other moms, also reached out to other "new" PMD families and started a PMD newsletter which was kept up with until the internet became a more popular and preferred means of communicating with everyone.
|
|
PMD Family Support Conference...
Each year families from all over the United States, and sometimes other countries, attend this conference. There are no programs to underwrite their cost, an average family may spend over $1500.00 to attend. They come to meet doctors who have cared for patients with PMD and hear about the latest research. Because of the care, friendship, and support they receive, many come back year after year making this a family vacation. Seeing the families leave with a renewed sense of confidence, knowing that they can care for their child and survive whatever the future holds is truly heart warming. We rely on volunteers and donations to keep the families costs to a minimum. If you would like to help support this conference you may make a donation to PMD Family Support by clicking here. We appreciate all donations no matter the size.
Each year families from all over the United States, and sometimes other countries, attend this conference. There are no programs to underwrite their cost, an average family may spend over $1500.00 to attend. They come to meet doctors who have cared for patients with PMD and hear about the latest research. Because of the care, friendship, and support they receive, many come back year after year making this a family vacation. Seeing the families leave with a renewed sense of confidence, knowing that they can care for their child and survive whatever the future holds is truly heart warming. We rely on volunteers and donations to keep the families costs to a minimum. If you would like to help support this conference you may make a donation to PMD Family Support by clicking here. We appreciate all donations no matter the size.
