Jake's PMD conference
Donation protected
Hi my name is Jake.I am 14 and 3/4 yrs old and I live courageously every day with a genetic disease called PMD (Pelizaeus-Merzbacher Disease). This is a rare central nervous system disorder in which coordination, motor abilities, and intellectual function are delayed to variable extent. PMD affects the myelin sheath -this is the fatty covering that acts as the insulator around my nerves.
I would very much like to attend the PMD conference next year in Indianapolis. Here is a link https://ghr.nlm.nih.gov/condition/pelizaeus-merzbacher-disease
The funds will be spent for airfare, hotel and meals while we are there.
At this conference we meet other kids and some adults with the same illness.
Physicians that specialize in this field attend and give us a lot of insight and knowledge on this disease. This is so much more than a conference. It is a newtwork of contacts. Families who have and are going through the same issues connected with this disease share stories, tears, triumphs and laughter together and provide a nationwide newtowork of support for each other. This conference is in June, 2017.
I can't tell you how exciting it would be to attend this special event. I would be most thankful to all who would choose to help me attend. It would be incredible if you could find it in your hearts to make this a reality for me and my grandmas. These two loving women provide all my care: bathing, feeding and they do it with so much love and joy. Thank you all in advance and I send my heartfelt appreciation.
Jake
My Uncle John and Aunt Steph are posting this for me.
I would very much like to attend the PMD conference next year in Indianapolis. Here is a link https://ghr.nlm.nih.gov/condition/pelizaeus-merzbacher-disease
The funds will be spent for airfare, hotel and meals while we are there.
At this conference we meet other kids and some adults with the same illness.
Physicians that specialize in this field attend and give us a lot of insight and knowledge on this disease. This is so much more than a conference. It is a newtwork of contacts. Families who have and are going through the same issues connected with this disease share stories, tears, triumphs and laughter together and provide a nationwide newtowork of support for each other. This conference is in June, 2017.
I can't tell you how exciting it would be to attend this special event. I would be most thankful to all who would choose to help me attend. It would be incredible if you could find it in your hearts to make this a reality for me and my grandmas. These two loving women provide all my care: bathing, feeding and they do it with so much love and joy. Thank you all in advance and I send my heartfelt appreciation.
Jake
My Uncle John and Aunt Steph are posting this for me.
Organizer
John Smith
Organizer
Grants Pass, OR