Danny’s 2 annual Chromosome 18 fundraiser | DonationMatch

Danny’s 2 annual Chromosome 18 fundraiser

Other Event Type for Chromosome 18 Registry and Research Society
Aug 05, 2023 from 1:00 PM to 6:30 PM
Deadline: July 5, 2023

Who's Going
Fundraising Goal $3,000
Expected Attendance 150
Reach 150
Ticket Price $0
Metro Area Philadelphia, PA
Exempt Status 501(c)(3) (IRS Form 990 Filed)
Nonprofit Category H - Medical Research
Attendee Gender Ratio 50% Male, 50% Female
Potential Item Uses Gift Bag Raffle/Sweepstakes
How Donors Promoted Event Program Event Announcement Email Blast
Attendee Ages 0-4 Years 5-11 Years 12-17 Years 18-24 Years 25-34 Years 35-44 Years 45-54 Years 55-64 Years 65+ Years
Attendees' Children's Ages 0-4 Years 5-11 Years 12-17 Years 18+ Years
Special Populations Moms Adults-Only Event (21+ Up) Active People
Description

To whom it may concern,

My name is Kelly Tremonte, and my son Daniel was diagnosed with Tetrasomy 18P when he was just a few months old.

Tetrasomy 18P is a very rare genetic disorder- so rare that there are less than only 600 cases throughout the entire world.

Tetrasomy 18p is a chromosomal condition that affects many parts of the body, usually causing feeding difficulties in infancy, delayed development, mild to severe intellectual disabilities, changes in muscle tone, distinctive facial features, and other birth defects.

Every case is slightly different. For example, my husband and I were told that Daniel would never walk, and despite that, he took his first steps just a few years ago at the age of four. Danny attends Russell Elementary in Broomall where he is lucky enough to attend a program that is geared toward his specific challenges. He receives amazing support from teachers.

This year, to help celebrate Daniel's 7 birthday, we are hosting our second benefit for The Chromosome 18 Registry & Research Society, an advocacy organization composed primarily of the parents of individuals with a chromosome 18 abnormality.

We will be donating every penny raised to help find therapies and specific treatments for this rare disease. Last year we held our first fundraiser and we were able to raise and donate $2,322!

We would love to have a goal this year and raise $3,000! This research society has had a hard timing raising funds due to the ongoing COVID-19 pandemic, and every penny helps them in their mission to provide individuals and families affected by chromosome 18 abnormalities with comprehensive medical and educational information with a focus on treatment options.

I'm now reaching out to our community for support, because I know firsthand the power of kindness given from our neighbors and friends. Any donation that can be raffled off at Daniel's birthday party on August 5th would be tremendously appreciated. All proceeds will be donated directly to The Chromosome 18 Registry & Research Society. Last year we also asked our guests not to bring a gift for Danny but to make a donation instead! This year we are doing the same!

We can't thank you enough for your support.

We are keeping
This private
Broomall , PA 19008