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In memory of
Aidan Michael Hough
February 23, 2021 - February 9, 2025
Feb 23, 2021 - Feb 9, 2025
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Who else knew Aidan?
Photo
In lieu of flowers
Please consider a gift to Cure Gm1 Incorporated.
$1,450.00
Raised by 11 people
How you can help
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
Send flowers
Share your sympathy. Send flowers from a local florist to Aidan's family or funeral.
Event details
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Started on Sunday, February 16, 2025 at 2 p.m. EST
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Ended on Sunday, February 16, 2025 at 5 p.m. EST
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Oatlands Historic House & Gardens 20850 Oatlands Plantation Lane, Leesburg, VA 20175
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Started on Monday, February 17, 2025 at 1 p.m. EST
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Ended on Monday, February 17, 2025 at 2 p.m. EST
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Was recorded —
Watch
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Oatlands Historic House & Gardens 20850 Oatlands Plantation Lane, Leesburg, VA 20175
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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,…
Favorites
What were Aidan's favorite ways to spend free time?
Cuddling on the couch with mom and dad, listening to kids play at the park
Cuddling on the couch with mom and dad, listening to kids play at the park
Cuddling on the couch with mom and dad, listening to kids play at the park
What were Aidan's favorite songs or musical artists?
Live guitar music at the local wineries
Live guitar music at the local wineries
Live guitar music at the local wineries
Timeline
Born
February 23rd, 2021
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February 23rd, 2021
1 month
March 23rd, 2021
Survived by
Stephanie Hough
Mother
Jason Hough
Father
Michael George
Grandfather
Connie George
Grandmother
Harvey Hough
Grandfather
Mei Lu
Grandmother
Kim Hough
Grandmother
Other people in Aidan's community
& others who may be privately subscribed to this website.
Other key details
Cause of death
GM1 Gangliosidosis
Method of disposition
Cremation
Funeral services provided by
Adams-Green Funeral Home
Hospice care provided by
Capital Caring Kids
In lieu of flowers
Please consider a gift to Cure Gm1 Incorporated.
$1,450.00
Raised by 11 people
Recent contributions
Recent contributions
Send flowers
Share your sympathy. Send flowers from a local florist to Aidan's family or funeral.
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Created with love by
Stephanie Hough (Aidan's mother) and
Jason Hough (Aidan's father).
