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In memory of
Aidan Michael Hough
February 23, 2021 - February 9, 2025
Feb 23, 2021 - Feb 9, 2025
In lieu of flowers
Please consider a contribution to Cure Gm1 Incorporated.
$1,450.00
contributed by 11 people
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Background
Since Aidan's GM1 diagnosis at 15 months old, he has gone from a child who could walk, talk, giggle, play, climb furniture, and devour a turkey leg faster than most adults I know to now being unable to move his limbs, hold his own head up, cry, or even smile.
Over the last few years I have used social media to raise awareness for GM1 and have connected with dozens of families across the world whose children have also been diagnosed with GM1 or other very similar fatal pediatric conditions.
One of the first questions they always ask is, “Do you know of any treatments?” And time after time I have to repeat the same devastating words, “No. There are currently no approved treatments for GM1, and almost every clinical trial for a treatment has been halted in the last few years due to lack of funding and concerns about the ability to recoup R&D costs due to it being a rare disease with a small population.”
70% of rare diseases are exclusively pediatric onset and overall, 95% of them have no approved treatments. Furthermore, it takes 15 years on average for a treatment to be developed and approved by the FDA, 3 times longer than my own son’s current life expectancy and the life expectancies of many other children with similar rare diseases. It is imperative that there be legislation in place to:
* Increase financial support for rare disease drug development
* Reduce the time it takes for rare disease treatments to be approved
* Incentivize companies to develop treatments for rare disease populations and for diseases such as GM1 gangliosidosis.
Without such legislation and the financial support for rare disease research and grants, our children will continue to suffer everyday while we, as their parents, must watch them slowly fade until one day we must bury them. Your support for our advocacy would be a step towards a future where families like mine aren’t given the most devastating news of our lives and then left to go home with no hope of treatment options within our children’s lifetimes. Contribute to Cure Gm1 Incorporated
Over the last few years I have used social media to raise awareness for GM1 and have connected with dozens of families across the world whose children have also been diagnosed with GM1 or other very similar fatal pediatric conditions.
One of the first questions they always ask is, “Do you know of any treatments?” And time after time I have to repeat the same devastating words, “No. There are currently no approved treatments for GM1, and almost every clinical trial for a treatment has been halted in the last few years due to lack of funding and concerns about the ability to recoup R&D costs due to it being a rare disease with a small population.”
70% of rare diseases are exclusively pediatric onset and overall, 95% of them have no approved treatments. Furthermore, it takes 15 years on average for a treatment to be developed and approved by the FDA, 3 times longer than my own son’s current life expectancy and the life expectancies of many other children with similar rare diseases. It is imperative that there be legislation in place to:
* Increase financial support for rare disease drug development
* Reduce the time it takes for rare disease treatments to be approved
* Incentivize companies to develop treatments for rare disease populations and for diseases such as GM1 gangliosidosis.
Without such legislation and the financial support for rare disease research and grants, our children will continue to suffer everyday while we, as their parents, must watch them slowly fade until one day we must bury them. Your support for our advocacy would be a step towards a future where families like mine aren’t given the most devastating news of our lives and then left to go home with no hope of treatment options within our children’s lifetimes. Contribute to Cure Gm1 Incorporated
All contributions made to Cure Gm1 Incorporated through Ever Loved will be sent with the designation, “Wherever it is needed most”, at Stephanie Hough and Jason Hough's request.
Recent contributions to Cure Gm1 Incorporated
Walls Family
$250.00
Submitted by Jamie Walls on
Feb. 26, 2025, 7:15 p.m. EST
Dindak family
$200.00
Submitted by David Dindak on
Feb. 20, 2025, 6:57 p.m. EST
$50.00
Feb. 18, 2025, 8:32 a.m. EST
Anonymous
$100.00
Feb. 16, 2025, 8:23 p.m. EST
$100.00
Feb. 16, 2025, 12:05 p.m. EST
$50.00
Feb. 15, 2025, 9:36 a.m. EST
$500.00
Feb. 14, 2025, 1:52 p.m. EST
Anonymous
$50.00
Feb. 14, 2025, 1:16 p.m. EST
$50.00
Feb. 14, 2025, 12:50 p.m. EST
Anonymous
$50.00
Feb. 14, 2025, 6:39 a.m. EST
Anonymous
$50.00
Feb. 13, 2025, 11:54 a.m. EST
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Memories & condolences
Listening to kids playing, music, taking walks, watching movies, getting on an airplane….Most of all, I will think of h…
Listening to kids playing, music, taking walks, watching movies, getting on an airplane….Most of al…
Listening to kids playing, music, taking walks, watching movies,…
In lieu of flowers
Please consider a contribution to Cure Gm1 Incorporated.
$1,450.00
contributed by 11 people
Show your support:
Contribute
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Created with love by
Stephanie Hough (Aidan's mother) and
Jason Hough (Aidan's father).
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