The Lost Enzyme Project

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

A huge thank you to our amazing interns for their dedication and hard work over the past six months. Your contributions ...
06/16/2026

A huge thank you to our amazing interns for their dedication and hard work over the past six months. Your contributions have helped advance our mission and support rare disease families around the world.

We wish you all the best as you begin the next chapter of your careers. Thank you for being part of The Lost Enzyme Project family—we can't wait to see all that you accomplish!




Host a Climb4Rare fundraising hike in your community!Choose a trail, pick a date, and we'll create the registration link...
06/13/2026

Host a Climb4Rare fundraising hike in your community!

Choose a trail, pick a date, and we'll create the registration link for you to share with friends and family.

Together, we're building a nationwide movement to raise awareness for rare disease and funding for a treatment for beta-mannosidosis.

📸 Going for your own hike? Bring a sign to the summit and tag or so we can share your climb!

Learn more: https://thelostenzymeproject.org/climb4rare/

Join the Climb4Rare Movement! Help us raise awareness and accelerate treatment development for Beta-Mannosidosis by gett...
06/11/2026

Join the Climb4Rare Movement!

Help us raise awareness and accelerate treatment development for Beta-Mannosidosis by getting involved in one of four simple ways:

✅ Join a hike
✅ Host a hike in your community
✅ Share your summit using
✅ Donate to support research and advocacy

Our First Climb4Rare Hike
📅 June 20th
⏰ 7:00 PM
📍 Lower Green Pond Trail, Huntsville, UT
👨‍👩‍👧‍👦 Family-friendly event
🎟️ Kids 12 and under hike FREE!

Want to host your own hike? Pick a location and date, and TLEP can help create a registration page for your community. Email [email protected]

📸 Sharing your summit? Tag or and use .

🔗 Learn more and register:
https://thelostenzymeproject.org/climb4rare/

Together, every step brings us closer to a treatment.

This September, The Lost Enzyme Project is climbing Mount Kilimanjaro to raise awareness and funding for treatment devel...
06/09/2026

This September, The Lost Enzyme Project is climbing Mount Kilimanjaro to raise awareness and funding for treatment development for Beta-mannosidosis, an ultra-rare disease with no approved treatment.

Every step represents the uphill battle rare disease families face while waiting for therapies that do not yet exist.

We’re inviting businesses and community partners to sponsor Climb4Rare and help move us closer to a treatment.

💛 Summit Sponsor — $5,000+
💙 Ascent Sponsor — $2,500
💚 Base Camp Sponsor — $1,000

Sponsors receive campaign recognition, social media promotion, website features, professional photo/video content, and logo placement on flags carried on Kilimanjaro.

📩 Interested in sponsoring? Visit TLEP.org or contact [email protected]

Climb4Rare is officially here! This September, we will take on Mount Kilimanjaro (19,341 feet) as the culmination of our...
05/30/2026

Climb4Rare is officially here!

This September, we will take on Mount Kilimanjaro (19,341 feet) as the culmination of our Climb4Rare campaign, raising awareness and $100,000 for beta-mannosidosis research and treatment development through The Lost Enzyme Project.

For us, this climb represents the uphill battle families affected by beta-mannosidosis face every day.

We’ll be hosting training hikes and community climbs along the way, so stay tuned on tlep.org for opportunities to join us. Interested in sponsoring the climb? Sponsors will have the opportunity to have their name or logo represented at the summit of Kilimanjaro.

The mountain is high, but the stakes are higher. Let's climb together.



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Meet our Rare Warriors.These action cards celebrate some of the amazing kids in our beta-mannosidosis community—their pe...
05/29/2026

Meet our Rare Warriors.

These action cards celebrate some of the amazing kids in our beta-mannosidosis community—their personalities, interests, strengths, and the things that make them uniquely them.

Because they are more than a diagnosis. They are warriors!


05/26/2026

Oliver’s story is the reality for so many children living with progressive rare disease.

At 5 years old, he was walking. Over the years, beta-mannosidosis has slowly taken that ability away, and today he is wheelchair bound.

This is why awareness matters. This is why research matters. And this is why these kids can’t wait for treatment. Tune into our latest podcast These Kids Can't Wait, to learn more about Olivers Story: https://thelostenzymeproject.org/podcast/



Did you know your donation to The Lost Enzyme Project could be doubled — or even tripled — through your employer’s corpo...
05/22/2026

Did you know your donation to The Lost Enzyme Project could be doubled — or even tripled — through your employer’s corporate matching program?

Many companies offer matching gift programs that allow employees to support nonprofits they care about while increasing their impact at no additional cost.

💙 Check with your employer to see if they participate in corporate matching
💙 Request The Lost Enzyme Project be added as a verified charity
💙 Help us accelerate treatment development for children with beta-mannosidosis

Every dollar matters, and matching gifts can make a huge difference for rare disease families still waiting for hope.

05/19/2026

In this clip from our newest episode of These Kids Can’t Wait, Oliver’s mom shares the moment she first realized something more was going on with her son—and the beginning of their rare disease journey.

These stories matter. Early signs are often missed, and so many families spend years searching for answers.

Oliver’s full story is now live on These Kids Can’t Wait. Listen on most streaming platforms or visit: https://thelostenzymeproject.org/podcast/

What if your morning coffee, grocery trip, or gym membership could help fund a treatment for kids with Beta-Mannosidosis...
05/14/2026

What if your morning coffee, grocery trip, or gym membership could help fund a treatment for kids with Beta-Mannosidosis?

Through the Children’s Rare Disease Alliance, local businesses can round up purchases to the nearest dollar at checkout to support treatment development and rare disease research through The Lost Enzyme Project.

Tag a business owner below, share this post, or send us a message—we’d love to connect.

Sometimes small change can help create life-changing treatments.

Address

P. O. BOX 11334
Chandler, AZ
85248

Telephone

+16023611880

Website

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