Hermanowski Family Foundation Initial Request Form

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Organization Name: Lymphangiomatosis & Gorham’s Disease Alliance, Inc
Legal Name (if Different):
Also Known As: LGDA
Mailing Address: 7901 4th St N Ste 5761
City: Saint Petersburg
State: FL
Postal Code: 33702
Main Phone: 310-501-3282
Main Fax: N/A
Organization Website: https://lgdalliance.org
Employer ID Number: 26-1224181
Organization Tax Status: 501 (c) 3

Proposal Information

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Today’s Date: March 24, 2023
Requested Amount: 5,000

Project Title: Mental Health Support for Teens & Young Adults
Project Description:

LGDA will conduct a virtual seminar that focuses on mental health access and awareness for teenagers and young adults, 16 – 21, who are living with complex lymphatic anomalies. The seminar will describe common mental health issues when dealing with a rare disease, geared specifically to the needs of teens and young adults. The seminar will be conducted by therapists with experience in rare diseases.

Complex Lymphatic Anomalies (CLA) are rare diseases where abnormal lymphatics invade normal tissues causing severe and life-threatening symptoms. Symptoms typically present in the first two decades of life.

Teens and young adults who have a CLA commonly face a long and arduous diagnostic journey. Their physical symptoms negatively impact their quality of life and their ability to make friends. They face a shortened life span with a limited ability to participate in activities. Many have physical deformities.

The emotional toll of living with pain, severe restrictions, guilt and shame for being the “needy one” in the family, and fear of what the future might bring. These feelings can be extreme, particularly for teens. They may not get the emotional support they need from their families or siblings. Siblings often experience compassion fatigue, anger, guilt, and shame for wanting their needs to be met.

We received a grant from Global Genes to conduct a virtual mental health program for both adult patients and parents who have a child with a CLA. It is a pilot program that we will build upon.

A grant from The Hermanowski Family Foundation will be used to provide an interactive, mental health seminar designed for teens and young adults in 2024.

Participants will learn coping skills important for psychological and emotional resilience. They will become more familiar with available mental health services and more comfortable talking with a mental health professional.

Total Project Budget: 18,980

Other Funding
Sources For The Project (Committed & Potential): We are searching for additional funding.

Project Duration: Two months
Geographical Area Served: U.S.
Age Group To Be Served: 16 – 21

Contact Information

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Contact Prefix (Mr,Mrs etc.): Ms.
Contact First Name: Laura
Contact Last Name: O’Neal
Contact Title: Director of Development
Contact Phone: 310-721-0613
Contact Email: laura.oneal@lgdalliance.org