The Lost Enzyme Project

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The Lost Enzyme Project A patient advocacy group dedicated to supporting those affected with Beta-mannosidosis and the development of new life-saving treatments.

Now that life has slowed down a little after our Mount Kilimanjaro adventure, we want to thank our incredible supporters...
10/15/2026

Now that life has slowed down a little after our Mount Kilimanjaro adventure, we want to thank our incredible supporters, sponsors, and donors!

Every donation, sponsorship, share, and word of encouragement helped us raise awareness for rare diseases.

We couldn't have done it without you, and we're just getting started! No child is too rare to treat.

The views, the people, the culture, the laughs, the challenge, and finally standing at 19,341 feet-an experience I’ll ne...
09/30/2026

The views, the people, the culture, the laughs, the challenge, and finally standing at 19,341 feet-an experience I’ll never forget.

We climbed for , but somewhere along the way I fell in love with the adventure. Kilimanjaro, you did not disappoint. Already dreaming about the next climb.

19,341 feet of pure determination—and a whole lot of stripes. Reaching Uhuru Peak is a grueling challenge for anyone, bu...
09/18/2026

19,341 feet of pure determination—and a whole lot of stripes.

Reaching Uhuru Peak is a grueling challenge for anyone, but we decided to turn some heads along the way. Though it looks like fun and games, the stripes carry a heavy meaning. In medicine, students are taught, “when you hear hoofbeats, think horses, not zebras.” But for families battling rare diseases like Beta-mannosidosis, they are the zebras. They are left fighting in the dark, often waiting years just for a proper diagnosis, only then to find out there is no treatment.

Every single exhausting step up Mount Kilimanjaro was a reminder of their daily battle. We climbed to shout from the roof of Africa that these families cannot wait. No child is too rare to treat!

💛September is Newborn Screening Awareness Month💛For families affected by beta-mannosidosis, early diagnosis can make all...
09/16/2026

💛September is Newborn Screening Awareness Month💛

For families affected by beta-mannosidosis, early diagnosis can make all the difference. The sooner beta-mannosidosis is identified, the sooner families receive answers, access critical resources, and connect with the support they need.

We're raising awareness about the life-changing impact of newborn screening and the importance of early detection for rare diseases. Every diagnosis represents a family searching for answers, and every step forward is strengthened by a community that cares.

At The Lost Enzyme Project, we're committed to supporting families, increasing awareness, and advancing research for beta-mannosidosis—because no family should have to navigate this journey alone.

✨ Donate today at TLEP.org and support awareness, family resources, and research for the beta-mannosidosis community.

09/15/2026

Summitting Mt. Kilimanjaro to raise awareness for rare disease is not enough. Let’s get a treatment to these kids.

Visit TLEP.org or CRDAlliance.org to make a donation. These kids can’t wait. No child is too rare to treat.

09/05/2026

Today is the day we are starting the Climb4rare and starting the 7 day hike up Mt Kilimanjaro! We have reached $20k but have a long way to go to help support these kids. Our goal is to raise $100k, so please help share and support our campaign at TLEP.org

What a difference a year makes. 💗On Skylar’s fifth birthday, she was intubated for the first time and fighting for her l...
09/04/2026

What a difference a year makes. 💗

On Skylar’s fifth birthday, she was intubated for the first time and fighting for her life. Today, on her sixth birthday, she is home, smiling and doing better than we could have imagined.

Happy sixth birthday, brave girl! 🎉

💙 September is Leukodystrophy Awareness Month 💙Together, we can raise awareness, advance research, and bring hope to fam...
09/02/2026

💙 September is Leukodystrophy Awareness Month 💙

Together, we can raise awareness, advance research, and bring hope to families affected by leukodystrophies and related rare disorders, including beta-mannosidosis.
Join us this month by sharing, advocating, or donating to support our mission. Every contribution helps move rare disease research forward.
Donate today at TLEP.org.

08/28/2026

Get Out There Girl is taking on Mount Kilimanjaro to help raise awareness and fund treatment development for children with Beta-mannosidosis. Every step is for the rare disease families still waiting for hope.

Address

P. O. BOX 11334
Chandler, AZ
85248

Telephone

+16023611880

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