Luke Knight's - Search for a Cure
Donation protected
Hello family and friends,
Denise and I have started a GoFundMe account for our son Luke Joseph Knight. Luke is the youngest of our 3 kids. At 6 months old, Luke was diagnosed with a rare genetic disorder called MECP2. This disorder is caused by a duplication of a gene in the body, which is responsible for the production of the MECP2 protein in the brain. In individuals with this disorder, the brain produces excess MECP2 protein. The excess protein causes severe developmental delays, autism, impaired motor function, impaired communication which most often means an inability to speak, and a shortened life span. Luke is currently 6 years old. Despite the many challenges that he’s faced and will continue to deal with… he is healthy; continues to develop at his own pace; and is the happiest kid you’d ever meet (unless we’re late with his meal :)
The good news (and frankly the point of this message) is that There Is A Cure On The Horizon!! A group of doctors from the Baylor College of Medicine, Texas Children’s Hospital (Luke’s Hospital), Stanford University School of Medicineand the University of California, San Francisco have developed a treatment strategy, which in animal tests has been completely successful in reversing all of the symptoms of MECP2. The treatment has also proven to be successful regardless of what age the recipient is at the time of treatment.
So, here’s why we’re asking for your help. The research for a cure is ready for human study primarily to fine tune the strategy in humans so that it maintains a normal level of protein in the brain. To date, research has been funded by grants and in large part by families of patients like Denise and I. Although it’s not in our nature to reach out for this type of help (believe me this is difficult), Denise and I feel that it’s now our obligation as parents of a beautiful child to do everything possible to help him live the absolute best quality of life he can. With a cure out there and seemingly within reach, we feel that we need to double down on this effort. The path to a cure is already identified and proven, and the only thing that is slowing down its continued development is additional funding.
If you are willing to help Luke, and others who are dealing with MECP2, please donate whatever amount you can to Luke’s GoFundMe account. No amount is too big or too small. All donations are greatly appreciated. We’ll leave the account open until the end of the year. After this time, I will then get my employer to 100% match up to $10,000 of our collective donations (e.g., $10,000 GoFundMe donation + $10,000 company match = $20,000 donation).
If you are not comfortable with donating through GoFundMe but would like to contribute, you can make donations directly to the Rett Syndrome Research Trust via PayPal (http://www.401project.com/take-action/). Donations are fully tax deductible. The Rett Syndrome Research Trust (RSRT) tax ID number is 26-0687439. Please note in the special instructions that your donation is in honor of Luke Knight.
If you are not willing or able to contribute, that’s certainly okay and we only ask that you keep Luke in your prayers. Finally, feel free to share this message and Luke’s account with anyone (or group) you think may be willing to contribute to the development of this cure.
To all of you, Denise and I thank you from the bottom of our hearts for your love, support, thoughts, prayers, and potential contributions.
If you’re interested, the following websites contain more information about MECP2 and the efforts to develop a cure:
http://www.401project.com/mecp2-duplication-syndrome/
http://www.401project.com/projects/
https://www.sciencedaily.com/releases/2017/08/170823145349.htm
Denise and I have started a GoFundMe account for our son Luke Joseph Knight. Luke is the youngest of our 3 kids. At 6 months old, Luke was diagnosed with a rare genetic disorder called MECP2. This disorder is caused by a duplication of a gene in the body, which is responsible for the production of the MECP2 protein in the brain. In individuals with this disorder, the brain produces excess MECP2 protein. The excess protein causes severe developmental delays, autism, impaired motor function, impaired communication which most often means an inability to speak, and a shortened life span. Luke is currently 6 years old. Despite the many challenges that he’s faced and will continue to deal with… he is healthy; continues to develop at his own pace; and is the happiest kid you’d ever meet (unless we’re late with his meal :)
The good news (and frankly the point of this message) is that There Is A Cure On The Horizon!! A group of doctors from the Baylor College of Medicine, Texas Children’s Hospital (Luke’s Hospital), Stanford University School of Medicineand the University of California, San Francisco have developed a treatment strategy, which in animal tests has been completely successful in reversing all of the symptoms of MECP2. The treatment has also proven to be successful regardless of what age the recipient is at the time of treatment.
So, here’s why we’re asking for your help. The research for a cure is ready for human study primarily to fine tune the strategy in humans so that it maintains a normal level of protein in the brain. To date, research has been funded by grants and in large part by families of patients like Denise and I. Although it’s not in our nature to reach out for this type of help (believe me this is difficult), Denise and I feel that it’s now our obligation as parents of a beautiful child to do everything possible to help him live the absolute best quality of life he can. With a cure out there and seemingly within reach, we feel that we need to double down on this effort. The path to a cure is already identified and proven, and the only thing that is slowing down its continued development is additional funding.
If you are willing to help Luke, and others who are dealing with MECP2, please donate whatever amount you can to Luke’s GoFundMe account. No amount is too big or too small. All donations are greatly appreciated. We’ll leave the account open until the end of the year. After this time, I will then get my employer to 100% match up to $10,000 of our collective donations (e.g., $10,000 GoFundMe donation + $10,000 company match = $20,000 donation).
If you are not comfortable with donating through GoFundMe but would like to contribute, you can make donations directly to the Rett Syndrome Research Trust via PayPal (http://www.401project.com/take-action/). Donations are fully tax deductible. The Rett Syndrome Research Trust (RSRT) tax ID number is 26-0687439. Please note in the special instructions that your donation is in honor of Luke Knight.
If you are not willing or able to contribute, that’s certainly okay and we only ask that you keep Luke in your prayers. Finally, feel free to share this message and Luke’s account with anyone (or group) you think may be willing to contribute to the development of this cure.
To all of you, Denise and I thank you from the bottom of our hearts for your love, support, thoughts, prayers, and potential contributions.
If you’re interested, the following websites contain more information about MECP2 and the efforts to develop a cure:
http://www.401project.com/mecp2-duplication-syndrome/
http://www.401project.com/projects/
https://www.sciencedaily.com/releases/2017/08/170823145349.htm
Organizer
Denise Knight
Organizer
Spring, TX