
Raising Awareness for My Children
Donation protected
My story is a very rare occurance for 99.9 % of the world, but one to often heard in my family. You see I married Bob back in 1976. Like all other young married couples we were excited to welcome children to our marriage. We had three.
Life was rocking a long when Bob's oldest brother started showing signs of confussion,wondering off, forgetting everything and everyone he knew. He could no longer work. What we as a family would find out about Butch, Bill, Bobby and Johhny the four brother's. They had inherited a very rare gene from their mother who had passed when the youngest was 3 years old. The only surviving child was a daughter, the first born. We burried all four boys in a matter of nine years. The last two boys Bobby and Johnny,who were 18 months a part in age, were laid to rest four months a part.
What could this gene be that had done this to a single family? It is called Early Onset Alzheimer's. This rare gene known as PSEN1, begins it's destruction in the mid 30's. Yes, you read that right. All those men were in their mid thirties when this began and died within 6-7 years.
The story does not stop there. This MONSTER gene is still doing it's damage. All the brother's passed on a 50/50 chance to their children of inheriting the same gene. The oldest brother's son passed at the age of 37. The second brother sons have been spared , but my children did not get so lucky.
Two of my three children have inherited the gene. My heart is shattered beyond repair, but I am determined to fight for them and the other's who suffer with this gene and all those who suffer with Alzheimer's.
Because my daughter who is a gene carrier had three children ,we now wait for the genetic outcome of her children, my grands. They too have a 50/50 chance of inheriting the gene.
I have been very active in fighting for a cure. My children have been participating in a Research Program at Washington University, St. Louis for the past five years. It is called DIAN, which stands for Dominantley Inherited Alzheimer's Network. They subject themselves to 4 days of grulling test, lumbar punctures and hours in machines. All so they can provide the answers to what scientist hope to discover what causes this and how to prevent it. Finding the answers to this puzzle might very well give researcher the answers for all other Alzheimer's.
There will be a conference in Washington DC July 18th , which will give families facing this a chance to speak with lawmmakers, research scientist, pharmacutical companies and the media. It also gives me a chance to connect with other families who face this same challenge.
I am asking for your help to fund my trip, so I can go speak for my familiy and those families and patients who can not speak for themselves.
Time is running out. You see my son is 35 and my daughter is 34. They are the two in the photo. I may not be able to stop the clock for them, but just possibbly I can stop it for my grands or other families. Finding the cure for them means finding the answer for all types of Alzheimer's.
Please donate and take this very import journey with me. Together we can make a difference.
Life was rocking a long when Bob's oldest brother started showing signs of confussion,wondering off, forgetting everything and everyone he knew. He could no longer work. What we as a family would find out about Butch, Bill, Bobby and Johhny the four brother's. They had inherited a very rare gene from their mother who had passed when the youngest was 3 years old. The only surviving child was a daughter, the first born. We burried all four boys in a matter of nine years. The last two boys Bobby and Johnny,who were 18 months a part in age, were laid to rest four months a part.
What could this gene be that had done this to a single family? It is called Early Onset Alzheimer's. This rare gene known as PSEN1, begins it's destruction in the mid 30's. Yes, you read that right. All those men were in their mid thirties when this began and died within 6-7 years.
The story does not stop there. This MONSTER gene is still doing it's damage. All the brother's passed on a 50/50 chance to their children of inheriting the same gene. The oldest brother's son passed at the age of 37. The second brother sons have been spared , but my children did not get so lucky.
Two of my three children have inherited the gene. My heart is shattered beyond repair, but I am determined to fight for them and the other's who suffer with this gene and all those who suffer with Alzheimer's.
Because my daughter who is a gene carrier had three children ,we now wait for the genetic outcome of her children, my grands. They too have a 50/50 chance of inheriting the gene.
I have been very active in fighting for a cure. My children have been participating in a Research Program at Washington University, St. Louis for the past five years. It is called DIAN, which stands for Dominantley Inherited Alzheimer's Network. They subject themselves to 4 days of grulling test, lumbar punctures and hours in machines. All so they can provide the answers to what scientist hope to discover what causes this and how to prevent it. Finding the answers to this puzzle might very well give researcher the answers for all other Alzheimer's.
There will be a conference in Washington DC July 18th , which will give families facing this a chance to speak with lawmmakers, research scientist, pharmacutical companies and the media. It also gives me a chance to connect with other families who face this same challenge.
I am asking for your help to fund my trip, so I can go speak for my familiy and those families and patients who can not speak for themselves.
Time is running out. You see my son is 35 and my daughter is 34. They are the two in the photo. I may not be able to stop the clock for them, but just possibbly I can stop it for my grands or other families. Finding the cure for them means finding the answer for all types of Alzheimer's.
Please donate and take this very import journey with me. Together we can make a difference.
Organizer
Mary Salter
Organizer
Dry Hill, TN