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Glenn and I are returning to UC-Davis campus in Sacramento August 24-29 th for the next step in his stem cell research study. They will do further testing and interviewing including a lumbar puncture, MRI and cognitive, physical testing and interviews to compare to the initial baseline we did in Dec. 2014.
Because it is a study they can't share any findings or test results to us since they are property of the University... UC-Davis Sacramento. I believe we travel the farthest to be a part of the study and there is no travel compensation just the testing is covered in the grant.
We did all the necessary preliminary tests at the campus in December and February. They said he is an excellent candidate and we couldn't be more thrilled to have this amazing opportunuty for Glenn but also for the future of all affected by Huntington's disease.
We want to thank all of you that have already donated to make our first 2 visits possible. They have been such a positive and hopeful visits which we pray will be eventually will make a difference in the progression and possible cure for HD.
We will have to wait for the FDA (the team is hopeful in Jan. 2016) to pass the actual procedure for the stem cell insertion surgery when Glenn will be required to stay a month. We are praying that this procedure is available before it's too late. We also know that this will help future generations diagnosed or at risk.
What is Huntington's Disease.. it is a disease that slowly deteriorates the brain and all normal body function. The earliest symptoms are often subtle problems with mood or cognition. A general lack of coordination and an unsteady gait often follows. As the disease advances, uncoordinated, jerky body movements become more apparent, along with a decline in mental abilities and behavioral symptoms. Physical abilities are gradually impeded until coordinated movement becomes very difficult.
Mental abilities generally decline into dementia. Complications such as pneumonia, heart disease, and physical injury from falls reduce life expectancy to around twenty years from the point at which symptoms begin. There is no cure for HD, and full-time care is required in the later stages of the disease. He is now the 6th generation ( dating back to 1836) and 11th person in his family that has been diagnosed or has died from HD. He also has many relatives at risk that have not been tested. The gene is passed down at a rate of 1 out of 2 births from a positive parent carrier.
Glenn has been retired for 5 years and is 45years old. He was unable to complete all necessary requirements to maintain a position in the IT field. His passion is surfing as he lived part of his youth in Hawaii. He loves fishing, biking, running, cc skiing, watching ALL sports. He has 2 teenagers who he loves dearly. We enjoy going out for dinner, golfing and dancing together, playing jeopardy, walking along Lake Michigan and spending every minute we can together!!
We need help to pay for all travel expenses in order to complete the study requirements in the next 18 months. Six to eight visits will be required including a stay of one month for Glenn when the procedure of the implant of the stem cells into the brain. From that point on we will continue to book travel according to the study's scheduling.
It is our understanding that frequent flyer miles can be used to purchase tickets for someone other than the card holder. Glenn will need a companion to travel and stay with him each trip. ( Sometimes a friend or a family member will have to accompany Glenn since I cannot be away from work for that amount of time.)
We are asking for your help since it is out of our means to fund all of the trips required to take part in this ground breaking study. Glenn is retired and I have no vaction time left until February. Only 40 patients are being accepted from the United States. If and when the FDA approves the insertion of the stem cells Glenn and has progressed too much with his symptoms he will not be able to continue in the study. Any monies donated that are not used for these trips will be donated directly to the Huntington's Disease Society of America in The Vuyk Family's name.
www.hdsa.org
Thank you in advance for your consideration and support. We pray that this study will be a beginning of the chance to prolong quality of life and maybe even prolong symptoms of this horrible disease.
Because it is a study they can't share any findings or test results to us since they are property of the University... UC-Davis Sacramento. I believe we travel the farthest to be a part of the study and there is no travel compensation just the testing is covered in the grant.
We did all the necessary preliminary tests at the campus in December and February. They said he is an excellent candidate and we couldn't be more thrilled to have this amazing opportunuty for Glenn but also for the future of all affected by Huntington's disease.
We want to thank all of you that have already donated to make our first 2 visits possible. They have been such a positive and hopeful visits which we pray will be eventually will make a difference in the progression and possible cure for HD.
We will have to wait for the FDA (the team is hopeful in Jan. 2016) to pass the actual procedure for the stem cell insertion surgery when Glenn will be required to stay a month. We are praying that this procedure is available before it's too late. We also know that this will help future generations diagnosed or at risk.
What is Huntington's Disease.. it is a disease that slowly deteriorates the brain and all normal body function. The earliest symptoms are often subtle problems with mood or cognition. A general lack of coordination and an unsteady gait often follows. As the disease advances, uncoordinated, jerky body movements become more apparent, along with a decline in mental abilities and behavioral symptoms. Physical abilities are gradually impeded until coordinated movement becomes very difficult.
Mental abilities generally decline into dementia. Complications such as pneumonia, heart disease, and physical injury from falls reduce life expectancy to around twenty years from the point at which symptoms begin. There is no cure for HD, and full-time care is required in the later stages of the disease. He is now the 6th generation ( dating back to 1836) and 11th person in his family that has been diagnosed or has died from HD. He also has many relatives at risk that have not been tested. The gene is passed down at a rate of 1 out of 2 births from a positive parent carrier.
Glenn has been retired for 5 years and is 45years old. He was unable to complete all necessary requirements to maintain a position in the IT field. His passion is surfing as he lived part of his youth in Hawaii. He loves fishing, biking, running, cc skiing, watching ALL sports. He has 2 teenagers who he loves dearly. We enjoy going out for dinner, golfing and dancing together, playing jeopardy, walking along Lake Michigan and spending every minute we can together!!
We need help to pay for all travel expenses in order to complete the study requirements in the next 18 months. Six to eight visits will be required including a stay of one month for Glenn when the procedure of the implant of the stem cells into the brain. From that point on we will continue to book travel according to the study's scheduling.
It is our understanding that frequent flyer miles can be used to purchase tickets for someone other than the card holder. Glenn will need a companion to travel and stay with him each trip. ( Sometimes a friend or a family member will have to accompany Glenn since I cannot be away from work for that amount of time.)
We are asking for your help since it is out of our means to fund all of the trips required to take part in this ground breaking study. Glenn is retired and I have no vaction time left until February. Only 40 patients are being accepted from the United States. If and when the FDA approves the insertion of the stem cells Glenn and has progressed too much with his symptoms he will not be able to continue in the study. Any monies donated that are not used for these trips will be donated directly to the Huntington's Disease Society of America in The Vuyk Family's name.
www.hdsa.org
Thank you in advance for your consideration and support. We pray that this study will be a beginning of the chance to prolong quality of life and maybe even prolong symptoms of this horrible disease.