Cure Kinley & Kennedy

12/27/2025

Merry Christmas from Kinley & Kennedy!

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Santa decided that we needed more than one day of magic, so he sent us to to make incredible memories as a family.

We spent Christmas Day traveling to Florida and enjoyed endless belly laughs yesterday at Magic Kingdom. We even got a great reminder during our Splash Mountain ride 😊

Merry Christmas everyone!

12/03/2025

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WOW! You helped raise $102,057 for our year-end and GivingTuesday fundraiser! Thank you for showing up, giving generously, and believing in our mission. We couldn’t do this without you.


Cure Kinley & Kennedy A Cure for Violet A Cure for Marley Sweet Iris

12/03/2025

Holy cow!

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We set a huge goal of $10,000 for and blew by that in no time. We increased it to $15,000 and after today we have exceeded that having raised $16,804 for !

Thank you for your ongoing support as our family fights this terrible disease. With exciting technologies like Enzyme Replacement Therapy, we KNOW there will be a day when a GM1 diagnosis comes with a concrete treatment plan.

We wish all of you the best, and happy holidays!

12/02/2025

These two got to meet Santa and the misses yesterday!

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Kennedy was WAY happier to see the Grinch, which perfectly captures her personality 😂

Everyone is getting excited for the holiday season over here!

is TOMORROW! We know there are a lot of amazing causes to support, but if you’re looking for one this year, we would greatly appreciate it if you support !

We are close to our (increased) goal of $15,000 in honor of Kinley and Kennedy! Link in bio and comments!

11/27/2025

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The decision to place a G Tube is not an easy one - it’s a very personal family decision surrounded by a lot of psychological back and forth - and is something we’ve wrestled with for a while now. At the end of the day, families like ours must make decisions like this with our child’s and families quality of life in mind.

Today we went in and had Kinley’s G Tube placed. For her, it means more consistent and reliable medication delivery (some days she has such a bad gag reflex she can’t get pills down and vomits, other days she just flat out refuses), the ability to hydrate her and get her fluids when she’s not up to it and, when needed, supplemental nutrition.

As always, she did amazing with everything. The doctors and nurses are always so impressed with how well she handles IVs and everything else going on. We also got a great tip to gift her a new stuffy with its own G Tube button like hers so she can “feed” her while using hers. She loved it. 🦒

We are so lucky to have an amazing provider team and friends who have been through this before to give us the pros and cons.

We hope this will improve Kinley’s quality of life for longer.

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11/15/2025

You would think we would know by now that we REALLY need to challenge you all!

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We are still more than 2 weeks away from and, after a generous donation last night, have already EXCEEDED our $10,000 goal!

Enzyme Replacement Therapy is so exciting. It’s also very expensive - $4,000,000 to be exact. We want to raise as much as we can for .

With that in mind, we are INCREASING our goal to $15,000 by December 2nd!

Thank you for your support. It means so much to our family and the other families facing this terrible disease.

Donation link in comments and bio!

11/09/2025

Ugh. 😩

Nothing major, but Kinley has really struggled to “bounce back” from a simple small illness or even a migraine. She stops eating, won’t drink, and ends up getting nauseous and can’t break that cycle. We’ve found ourselves in the ER twice in the last three weeks just to get her fluids. She does pretty good after getting hydrated but the reality is that her body has to fight twice as hard just to keep going.

We are scheduled to get a G-tube placed the week of thanksgiving - something that will enable us to hydrate her ourselves, give her medication and anything else she might need when she’s not feeling well. Everyone is telling us “the earlier the better” but it is such a hard psychological milestone in this disease and also a very personal family decision. Pair that with her really struggling to walk and needing to send her to school in her stroller…it’s a lot. It’s not fair.

Thank you for everyone who has donated to our campaign supporting so far. We are close to our goal, and it’s a great reminder that we have an army in our corner! Your support and encouragement helps remind us that while this disease is unfair and cruel, the future might not have to be this way for others with GM1.

11/04/2025

Wow! 😲

In less than 24 hours we have raised over $3,500 towards our $10,000 goal!

We are so excited about Enzyme Replacement Therapy and how it can benefit GM1 patients and families.

Check out our latest video that provides some highlights of ERT.

Additional information on the Cure GM1 Foundation ERT program can be found in the comments along with the link to donate!