this blog story is about
Dylan Nikol
my grandnephew age 2
who has a rare chromosome disorder
shown here with his dog, Doug the Pug
and here he tells you about it
Hi everyone, I wanted to introduce myself
My name is Dylan Nikol
and I am 2.5 years old.
I have a rare chromosome disorder called
chromosome 6p duplication (or partial trisomy 6). Essentially instead of
having 2 copies of chromosome 6, I have about 2.5 copies.
There’s only
about 50 reported cases of this, and probably only a handful of my exact
duplication. Since it’s so rare, there’s very little out there in the
literature, and a lot is unknown.
This
nonprofit was started on my behalf, to help raise awareness of and
support research for Rare Chromosome and Gene Disorders, including 6p
duplications.
Thank you so much for your support!
The colors for Rare Chromosome Disorders are yellow and blue
and Awareness Day is June 13
Dylan's first fundraiser is June 22, 2024
I was asked by my niece, Tara Nikol, Dylan's mom, if I would be interested in seeking fundraiser donations from places like my fave restaurant Crabtree's
okay
I can do that
Tara and Jason sent flyers
I used the first batch
I asked for more
used the second group
then I started printing my own
I wrote a blurb
I
have been tasked with the honor of requesting donations in the form of
gift cards or gift baskets or merchandise for a fundraiser raffle to be
held on June 22, for my grandnephew, Dylan Nikol, age 2, who suffers
from a rare chromosome disorder. I have flyers with the donation
information, Dylan’s story and the mission of our team and an
accompanying introductory letter verifying I am a designated volunteer
for the organization. Thank you in advance for any help you are able to
give.
I learned on the job
who to approach
ways to connect
in person
email
text
Insta
website inquiry
what pitch works
grudges
I have them after this...but have decided not to list the places
the generosity and parsimony I encountered were eye opening
and ended up with 33 offerings from people, business and corporations and other fundraisers
met some incredible people
caused two people to cry
and others to hide
people sent me to other people
and to known fundraiser friendly websites
I found out
There are companies and organizations dedicated to helping with fundraisers and involvement in community causes: Trader Joe's, Costco. NY Jets, NY Giants, Long Island Ducks, Hicks, dohertyinc.com, Starbucks, and more
It was an astonishing opportunity for me and I thank Tara and Jason Nikol and Jenny Nikol for inviting me in
and for my family and friends who participated with donations, merch and suggestions
If you are reading and hearing about Dylan for the first time please consider joining in with a contribution, donation, gift card, merchandise, time, tickets, gift basket
the flyer above gives all sorts of ways to help
and if you are one of the places who promised and have yet to deliver
not too late
donate
and to those I left self addressed stamped envelopes
use them and stick in a gift card
you owe me a stamp if you don't
https://www.dylans6pdreamteam.com/
https://www.zeffy.com/en-US/fundraising/4b1a24fd-36ec-4703-b131-9c4bb87b335f
Liam helped by providing support from home
as did Dylan's, Doug the Pug
woof woof