A Cure for Marley
Tax deductible
About Marley:
Marley is a happy, active, and beautiful four year old girl! She lives in Michigan with her daddy, Matt, mommy, Megan, sister Selah and dog Otis. When Marley was around one and a half years old she began to show some signs of developmental delay. In the beginning we were not worried; however, we started working closely with her pediatrician and The Early On program. On January 28, 2020, after a year of answerless tests (chromosome testing, spinal MRI, x- rays, EEG, echo-gram, bloodwork and a brain MRI) we received the call that no parent ever wants to answer. Marley has an extremely rare genetic disease called GM1 Gangliosidosis. At this point there is no cure. They predict life expectancy anywhere from early to late childhood- 5-10 years of age.
Marley continues to impress us with her ability to lead an adventurous life and not letting her physical delays discourage her. She has also blossomed into a wonderful big sister to Selah. Marley attends an early childhood special education preschool where she loves seeing her teachers and classmates. She also attends speech, occupational, and physical therapy. Perhaps her favorite kind of therapy is called hippotherapy (therapeutic horse riding), which allows her to ride her favorite horse - Harvey.
Our family is on a journey to embrace every hug, kiss, and smile from our sweet Marley Joy. To say ‘I love you’, to create memories and to share her joy with everyone we meet. We are thankful to God for entrusting Marley to us and we believe that there will be a miracle for Marley! A breakthrough is coming, by faith we’ll see a miracle.
About GM1 Gangliosidosis
GM1 Gangliosidosis is an aggressive disease where the body does not produce adequate enzymes to break down certain molecules. Instead, these molecules collect on the brain and spinal cord, leading to widespread neurodegeneration. The list of complications that Marley is up against is truly horrifying. We are in a race against time. A breakthrough is coming!
Currently there are multiple active clinical trials racing for a cure to this devastating disease. The initial results are very exciting and promising, but researchers need support and funding to continue on this positive track toward reaching a cure. Our prayer is that Marley will be selected for a trial or that hearts would be softened to approving a treatment quickly. Our goal is to support that mission and ensure research continues to progress toward a cure, not only for Marley, but for all families affected by GM1 Gangliosidosis.
Our Goal: The Cure GM1 Foundation is a 501(c)(3) nonprofit organization whose mission is to advance the development of life-saving treatments for GM1, and helps to fund critical medical research. Every dollar of your donation can help fund clinical trials and expedite research for a cure! Our goal is to raise $50,000 for the CureGM1 Foundation.
Specific ways you can help:
•Pray! Please pray for Marley and all the other children affected by GM1 Gangliosidosis. Pray for time, memories and, ultimately, a cure!
•Donate: If you feel led, please consider donating to the Cure GM1 Foundation. Every dollar goes toward healing GM1 children and is 100% tax deductible. Also, ask if your company has a donation matching program.
•Advocate: Please share Marley’s story with others in your community!
•Amazon Smiles: If you aren’t already supporting a charity via Amazon Smile, please take a moment to sets your beneficiary to the Cure GM1 Foundation. When you shop a Smile.Amazon.com, a donation will automatically be provided to the foundation for each dollar spent.
Thank you all very much for supporting Marley on this journey!
Psalm 27: 13-14
Marley is a happy, active, and beautiful four year old girl! She lives in Michigan with her daddy, Matt, mommy, Megan, sister Selah and dog Otis. When Marley was around one and a half years old she began to show some signs of developmental delay. In the beginning we were not worried; however, we started working closely with her pediatrician and The Early On program. On January 28, 2020, after a year of answerless tests (chromosome testing, spinal MRI, x- rays, EEG, echo-gram, bloodwork and a brain MRI) we received the call that no parent ever wants to answer. Marley has an extremely rare genetic disease called GM1 Gangliosidosis. At this point there is no cure. They predict life expectancy anywhere from early to late childhood- 5-10 years of age.
Marley continues to impress us with her ability to lead an adventurous life and not letting her physical delays discourage her. She has also blossomed into a wonderful big sister to Selah. Marley attends an early childhood special education preschool where she loves seeing her teachers and classmates. She also attends speech, occupational, and physical therapy. Perhaps her favorite kind of therapy is called hippotherapy (therapeutic horse riding), which allows her to ride her favorite horse - Harvey.
Our family is on a journey to embrace every hug, kiss, and smile from our sweet Marley Joy. To say ‘I love you’, to create memories and to share her joy with everyone we meet. We are thankful to God for entrusting Marley to us and we believe that there will be a miracle for Marley! A breakthrough is coming, by faith we’ll see a miracle.
About GM1 Gangliosidosis
GM1 Gangliosidosis is an aggressive disease where the body does not produce adequate enzymes to break down certain molecules. Instead, these molecules collect on the brain and spinal cord, leading to widespread neurodegeneration. The list of complications that Marley is up against is truly horrifying. We are in a race against time. A breakthrough is coming!
Currently there are multiple active clinical trials racing for a cure to this devastating disease. The initial results are very exciting and promising, but researchers need support and funding to continue on this positive track toward reaching a cure. Our prayer is that Marley will be selected for a trial or that hearts would be softened to approving a treatment quickly. Our goal is to support that mission and ensure research continues to progress toward a cure, not only for Marley, but for all families affected by GM1 Gangliosidosis.
Our Goal: The Cure GM1 Foundation is a 501(c)(3) nonprofit organization whose mission is to advance the development of life-saving treatments for GM1, and helps to fund critical medical research. Every dollar of your donation can help fund clinical trials and expedite research for a cure! Our goal is to raise $50,000 for the CureGM1 Foundation.
Specific ways you can help:
•Pray! Please pray for Marley and all the other children affected by GM1 Gangliosidosis. Pray for time, memories and, ultimately, a cure!
•Donate: If you feel led, please consider donating to the Cure GM1 Foundation. Every dollar goes toward healing GM1 children and is 100% tax deductible. Also, ask if your company has a donation matching program.
•Advocate: Please share Marley’s story with others in your community!
•Amazon Smiles: If you aren’t already supporting a charity via Amazon Smile, please take a moment to sets your beneficiary to the Cure GM1 Foundation. When you shop a Smile.Amazon.com, a donation will automatically be provided to the foundation for each dollar spent.
Thank you all very much for supporting Marley on this journey!
Psalm 27: 13-14
Fundraising team (2)
Sarah Waun
Organizer
Okemos, MI
Cure GM1 Foundation
Beneficiary
Megan Waun
Team member