A.J. Highfield - Spaghetti Dinner

Location:
 Chartiers Valley High School

50 Thoms Run Road

Bridgeville, Pennsylvania

 

Date:

Saturday, June 11 · 4:00pm - 7:00pm

 

Additional Info:

Dinner includes Beverage, Salad, Bread, Pasta & Dessert
Adults: $8 per ticket
Children ages 5-12: $5
Children under 5: $Free
Checks payable to: ACHIEVA Family Trust - Benefit of A.J. Highfield
Also available at the dinner:
Raffle Tickets for Chinese Auction Baskets
“Lottery” Raffle Tickets

All proceeds benefit A.J. Highfield Butterfly Kid.

 

A.J. Highfield was born on March 20, 2011 with Epidermolysis Bullosa (EB). With skin as fragile as a butterfly wing, EB patients are dubbed “Butterfly Children”.

EB is a rare skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering. Severe forms of EB cause patients to live with constant pain and scarring.

The only treatment for EB is daily wound care and bandaging.
Today there is no cure.

Can't attend? You can send a donation of any amount directly to ACHIEVA Family Trust - Benefit of A.J. Highfield
Attn: Amy Dolan Strano, Esq.
711 Bingham Street
Pittsburgh, PA 15203

1st Annual Walk-A-Thon Epidermylosis Bullosa In Memory Of Angelica Tafoya

Date:

Saturday, June 25 · 7:00am - 8:00pm

 

Location:

Colorado State University-Pueblo

2200 Bonforte Boulevard

Pueblo, Colorado

 

Organized by:

Tori Siguenza

 

Additional Info:

Hi everyone, I am 19 year old full time college student I am starting an annual Walk-A-Thon to raise awareness of a rare and deadly skin disease Epidermolysis Bullosa (E.B.) it will be in Memory of my cousin Angelica Tafoya, she passed away October 18th, 2005. She was 12 years old. All money raised in this event will go to the E.B. fund at The Children’s Hospital in Denver, CO.

There will be a $20 Registration fee for each participant to be turned in with the registration form by June 1st, if you miss the registration deadline, you can register at the event, there is a $25 LATE registration fee. It would be greatly appreciated if you register by the deadline in order for me to ensure that I accommodate for enough food and the correct size t-shirts for each participant. The registration fee will cover one t-shirt, breakfast and lunch. The pledge sheet and donations are to be turned in during sign in on the day of the event. There will be bounce houses and other events for children so bring the entire family. Extra meal tickets, additional T-Shirts, other items and refreshments will be available for purchase at the event, as well more opportunities for donations.


CONTACT ME TODAY FOR MORE INFO & A REGISTRATION PACKET.


You can participate as an individual or as part of a team. Teams can consist of family members, co-workers, or friends. Our goal is to have a minimum of ONE person from each team walking at all times. Hope to see you there!

IF ANYONE IS INTERESTED IN PARTICIPATING OR HELPING IN ANY WAY PLEASE LET ME KNOW. LOCAL BUSINESSES ARE ENCOURAGED TO MAKE CONTRIBUTIONS TO THIS EVENT AND WILL BE OFFERED A PLACE FOR ADVERTISEMENT OF THEIR BUSINESS ON THE EVENT T-SHIRT. Even if you can not attend the actual event you can still contribute in many ways.

For more information, please contact: Victoria (Tori) Siguenza
(719)242-6724 Victoriasiguenza@gmail.com


PLEASE PASS THIS INVITE ON!

GREAT WAY TO HELP THOSE IN NEED!

 

Visit their Facebook Page 

EB in the News

Church to host fundraiser to fight rare skin disease

EB in the News

Family turns heartache 

into hope for others

 

 Bella's Blessings

An Evening of Song -- EB Fundraising Concert for Ryan David Scott

Where:  The Gilman Theater located at the Mandell Jewish Community Center at 335 Bloomfield Ave, West Hartford, CT

Time:  Saturday, May 14 · 7:00pm - 10:00pm

 Info:  All proceeds benefit DEBRA (Dystrophic Epidermolysis Bullosa Research Association) in loving memory of Ryan Scott.

What to Expect:  The wonderful music of Latanya Farrell and the Bookman Styles Band, the Old St. Andrew’s (OSA) Choir and the always entertaining OSA men’s chorus. A silent auction, raffle and refreshments to purchase.

Cost: $20.00 a ticket

Special Information: The evening will be hosted by Scot Haney, meteorologist of WFSB, channel 3, Eyewitness News This Morning and co-host of channel 3's Better Connecticut.

See their Facebook Page for more info or email Mary Ellen @ mescottpit@yahoo.com