PC Awareness Around the World

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2013 Events

Visit the PC Facebook Awareness Event page for details on more events.

2nd Annual Thick Skin Duathlon 2013

The Run-Bike-Run Duathlon was again held in Santa Cruz, California on June 22 as the closing session for the 2013 PC Patient Support Meeting. Sponsored by our biotech partner, TransDerm, Inc. The following video shows highlights of the event.

Guess How Many Gumdrops & School Craft Sale 2013

A family in Southwest Wales held some fundraising activities at their son's school. Their son did a guess how many gumdrops are in the jar and raised £32! The family also sold craft bits that they made as part of their new craft venture, Cinnamon and Timbit and sold £57 worth. This provided the family with the opportunity to speak to many parents and teachers about PC.

2nd Annual PC Garage Sale 2013

The McGrath, Filoso & Sands families held their 2nd annual garage/yard sale as their PC Awareness Kick off over Memorial Day weekend. Despite stormy, cold and very windy weather at the beach, they were able to raise almost $300 during the 2-day garage/yard sale.

Fundraising Archive

The Fundraising Archive features many wonderful fundraisers who have made a difference over the years. We are so grateful for these stars! Each effort is absolutely essential to achieving our mission goals.

How Do I Get Started To Sponsor An Event?

It’s easy as 1-2-3!

  1. Choose your event. We ask every PC patient family to hold an event on or near PC Awareness Month in June. This event can be a bake sale, a bike ride, a craft sale, a trunk/yard/garage sale, a dinner with friends, a talent show, a walk or run… or some other event that would be fun for you and friends to host. It can be LARGE or small and whether your project raises $1 or $100,000, you will be joining with other PCers around the world creating “PC Awareness Around The World.”
    The Awareness Archive has many great ideas from PCers around the world. Raise awareness, celebrate with all of your PC family, have fun, raise funds.
  2. Register your event with PC Project.  Please post about your event on the PC Facebook Awareness Event page. The many events around the world (large and small) create a  Pachyonychia Congenita news story which will enable us to meet the goal of  public awareness for PC. You may also send an email to info@pachyonychia.org to tell us YES you will hold an event and any details or photos you'd like to share.
  3. Report Your Success. When you forward the funds raised at your event, please also send a report and photos to tell what you did. This will help others who may want to use your ideas in the future. Our sponsor will match $2-for-$1 the money you send from your event so that your efforts will bring three times the amount earned. Extending awareness of Pachyonychia Congenita is important for better funding, better care and  understanding.

Why is PC Awareness So Important?

There are many benefits of community awareness of PC. We need to raise millions of dollars for research. This does not happen with first building a solid community both in the medica/scientific world and also in the public area. Patients are the most effective in the public area of their own neighborhood, school and community. PC Project has been effective in producing high-quality, peer-reviewed research articles which can be easily shared with professionals.

These awareness efforts and individual fundraising efforts make a real impact when applying for research grants or seeking sponsorhip funding. Please be part of the PC community effort. Together we can succeed in raising funds and raising awareness of PC.


Awareness Archive

2nd Annual Thick Skin Duathlon

Held as the closing session for the 2013 Patient Support Meeting, the Run-Bike-Run Duathlon is a major annual fundraising event for PC research sponsored by TransDerm, Inc. as part of the PC Awareness Around the World activities. 

3rd Annual Pachyonychia Congenita Charity Golf Tournament
Midway, Utah USA - August 24, 2013

The Tournament was held at the Crater Lakes Golf Course at The Homestead Resort. With 128 golfers participating and dozens of sponors, this was a successful PC Awareness event for raising funds and raising awareness of PC in the community..

2012 Awareness Events

A alphbetical list of many of thef 2012 PC Awareness Day events includes many great ideas. Click the links for photos, flyers and news articles from the events.

Bake Sale at moutain bike race. Christine & Matthew - Wausau, WI. NEWS ARTICLE & FLYER also PHOTOS
Balloon Release, Archery and Craft Sale. Sylvie & Francois- Noyon, France. NEWS ARTICLE & FLYER also PHOTOS
Bowl-For-A-Cure. Adam & Ariel - San Antonio, TX. FLYER
Car Wash Event. Harry & Amanda - Indianapolis, IN. NEWS ARTICLE also PHOTOS
Chess Tournament and Book Fair. Beatrice - - Sarrebourg, France. FLYER
Collection Boxes in Restaurant. Jeanette - Poole, England.
Duathlon, 5K & Kid races and Press Conference. TransDerm - Santa Cruz, CA. FLYER also PHOTOS
Family BBQ with face painting, tie dye, games... Juliette - Harlem, NY.
Friends & Family Dinner. Monica - Rio de Janeiro, Brazil. PHOTO
Garage Sale & Lemonade Stand. Jessica & David - Lagrangeville, NY. LETTER
Gourmet Dinner For Friends. Molly - Sacramento, CA.
Bike Race (already completed!) Kieran - London, England.
Magazine Article, Family Dinner, Small Auction. Elise - Liemdepde, Netherlands. NEWS ARTICLE also PHOTOS
PC Awareness. Peter - South Hampton, NY.
PC Awareness Brochures & Heart lollipops. Pamela - Madrid, Spain. PHOTO
PC Awareness Website. Soe - Oosterbek, Netherlands. FLYER also PHOTOS
Restaurant 10% to PC Project Day. Eileen - San Antonio, TX.
Raising Awareness. Shareen & Raj - Toronto, Canada.
Softball Tournament and Concession Stand. Nicky & Family - Emerson, NJ. FLYER
TV show. Advertisments, Fun Kid Activities. Jo - Wellington, New Zealand. NEWS ARTICLE & FLYER also PHOTOS
Two boating events…one for adults, one for teens. Helaine & Erika - Oxford, OH.
Unicycle rider in Five Burrow New York 40 mile bike ride. Justin - New York, NY.
WORLDWIDE PC Web Meeting. We hope at least 100 Pcers will log in during the day and say 'hi' to other Pcers. PC Project - Salt Lake City.
Yard Sale - GIANT Yard Sale. Gina - Clinton, IL
Yard Sale, Collection boxes, Raffle at Hair Salon. Roseann - King of Prussa, PA. PHOTOS
Yard Sale and Pizza Party. Marie - Estero, FL.
Yard Sale- GIANT Yard Sale. Darlene - Bolton Landing, NY.
Yard Sale. Janice, Sam, Nate - Salt Lake City, UT. PHOTOS

Awareness Events Report 2012 is a six page quick summary of most of the 2012 events.
Awareness Events List 2012 is a one page flyer used to advertise some of the 2012 events.