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.

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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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/

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/

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.

05/12/2026

About 50% of hearing loss in children is genetic in origin, and hearing loss can be one of the earliest signs of a lysosomal storage disorder (L*D).

Hearing loss has been reported in multiple L*Ds, including Alpha-Mannosidosis, Beta-Mannosidosis, MPS disorders, Gaucher disease, Fabry disease, and Niemann-Pick disease.

Early genetic testing can help families get answers, support, and access to care sooner.

We’re sharing this no-charge genetic testing program through Invitae Detect L*Ds for eligible families in the U.S. and Canada. Please share with families, audiologists, and hearing loss organizations who may benefit.

International Society for Mannosidosis and Related Diseases National MPS Society Labcorp Erin HubbardFabry International Network Fabry Disease News Phoenix Day School for the Deaf Invitae

05/10/2026

Coming Soon on These Kids Can’t Wait — Oliver’s Story

Every rare disease journey has a story worth telling, and Oliver’s is one filled with strength, resilience, and love.

In this upcoming episode, we hear from Oliver’s mom as she shares their family’s journey navigating life with rare disease, the challenges they’ve faced, and the hope that continues to move them forward.

These conversations matter. Every story brings awareness. Every voice brings us closer to a treatment.

✨ Stay tuned for this powerful episode coming soon.

05/07/2026

A lot of people ask us, “How can we help?”

The truth is—there are so many ways to make a difference right in your own community.

From sponsoring campaigns, to checkout charity partnerships, corporate matching, or simple T-shirt fundraisers, every effort helps move treatment development forward for kids with beta-mannosidosis.

Visit TLEP.org and click Fundraising to learn more.

05/05/2026

The month of May is Beta-mannosidosis awareness month, and during this month, TLEP encourages you to Imagine.

Imagine you are Oliver.

Imagine what treatment means.

Imagine how you might help.

For more information about raising awareness, how to host a fundraiser or donate to TLEP, please visit thelostenzymeprogect.org.

Address

P. O. BOX 11334
Chandler, AZ
85248

Telephone

+16023611880

Website

https://bit.ly/lostenzyme, https://thelostenzymeproject.org/

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