B.E.S.T. Bladder Exstrophy Support Team

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$10,000 Goal

The California Bladder Exstrophy Support Team (B.E.S.T.) is an organization of families, individuals, and medical professionals whose lives are touched by bladder exstrophy and related conditions. We are an ever-growing support network throughout California... and beyond! We are dedicated to providing accurate and up-to-date information and resources. The B.E.S.T family is here to help you increase your understanding of exstrophy and to discover that there are great approaches out there to help meet your challenges and needs.

When you connect to the B.E.S.T. organization, you are a member of the entire B.E.S.T. Family and membership is free.

We serve any person or family within the four-county region whose life is touched by bladder exstrophy. However, we turn no person or family away, no matter where they live. Bladder Exstrophy is a condition that must be managed throughout a person's life. People often experience multiple surgeries, procedures, complication and different solutions over time as their condition and needs change and as medical science progresses. This condition may touch anyone or any family. As an inclusive, diverse organization, we help everyone.

We have grown into a large community of adults, children, parents, and professionals who care deeply about helping each other. Two of our core missions are to reach out to individuals with this birth defect who have felt alone in their experience and to educate medical professionals about the resources and support available to their patients with this condition. Our current operating expenses are approximately $3,000 per year. All labor is strictly volunteer.

California B.E.S.T. holds an annual campout each year and a Spring meeting in the Bay Area of Northern California. Speakers, free childcare and other support services are provided at these activities. We also offer mentoring to individuals navigating this challenging life experience.

Mission

The California Bladder Exstrophy Support Team's mission is to provide social, emotional, and educational support to those in the bladder exstrophy community.

Needs

Donations are needed to help individuals with few resources come to our annual Spring Meeting and Annual Campout. Donations are also needed for honoraria and travel expenses for expert medical professionals to our scheduled support activities.

Currently, medical professionals who are expert in this condition and its complications volunteer at their own expense to come to our meetings. With your donations, we will be able to offer some level of travel reimbursement. This will allow us to widen our ability to draw professionals from beyond the West Coast Bladder Exstrophy Centers of Excellence.

Donations will also support travel reimbursement costs for individuals and families who would benefit from attending the B.E.S.T. Annual Campout and Spring Meeting but who do not have sufficient resources to come at their own expense.

Finally, donations will support the costs of holding the Spring Meeting and the Annual Campout. Both of these events are currently supported completely by in-kind donations from individuals and families. We'd like to be able to pay for site registrations and other organizational costs.

All labor to run the organization and our activities is strictly volunteer. We have no paid staff.

Equity Statement

Bladder Exstrophy touches the lives of many individuals and families. We welcome all. The B.E.S.T volunteer organization helps individuals live their lives with dignity, free of all discrimination, but particularly free of discrimination based on special needs and the issues individuals must deal with based on being born with bladder exstrophy.

Organization Data

Summary

Organization name

B.E.S.T. Bladder Exstrophy Support Team

other names

B.E.S.T.

Tax id (EIN)

82-1066412

Mission Category

Health Care

Operating Budget

$0-$50,000

Organization Need

Funding: Program, Funding: Other

Demographics Served

Individuals with disabilities, General population

Local Counties Served

El Dorado, Placer, Sacramento, Yolo

Equity Statement

Equity Statement

Address

2122 Decente Ct.
Cameron Park, CA 95682

Service areas

Yolo County, CA, US

Sacramento County, CA, US

El Dorado County, CA, US

Solano County, CA, US

Amador County, CA, US

Phone

650-714-1146