PC Project - Home Page

Remember: 2 June 2012 is PC Awareness Day Around the World!

JOIN WITH US - ANYTHING YOU PLAN WILL BE JUST PERFECT. PLEASE BE PART WITH ALL YOUR PC COMMUNITY
We are so excited here in Salt Lake City to hear about the plans individuals are making.
- We've seen a clever flyer from France with a flip-flop lined with tacks! What a great graphic. We'll share if we can
- We've heard of plans in Indiana for a great car wash event with flirty girls and car wash guys. What fun!
- We've heard about a big walk-a-thon event at TransDerm (our pharma partner) called "Count Every Step" involving the US Congressman...
- We've heard about collection boxes at a neighborhood restaurant! - We've heard about a family dinner party, a preschool event, TV shows...
- and we've already received the first donation for PC Awareness Day!

Whatever you are thinking and doing, we feel more than ever before the energy and empowerment among PCers around the world. Please send us little details as your event is forming so we can share and help others become excited and empowered to do something in their own area.

CAN YOU HELP US KEEP THE PUBLICITY GENERATING?

(1) If you use Facebook, please keep posting going there and on Twitter, too, if you like to Tweet!
(2) We'll keep blogging on the PC Website (www.pachyonychia.org) and you can add a comment there to any blog
(3) If you know other PCers, email them and encourage them to have FUN and plan to do something for PC Awareness Day 2012. And, be sure to tell them to let us know that they will participate in some way.

Imagine joining hands in this wonderful opportunity to be creative, have fun with friends, raise funds for PC research and support -- and raise awareness of PC and PC Project's mission in your own communities, culture, and language. Let's start teaming up and sharing ideas! Together we are strong! Please add comments here! and blog on our Facebook Events page. For guidelines see our Events page.

PC Awareness Day Facebook Event Page

CAMP WONDER - for children with skin disease

Each year the American Academy of Dermatology sponsors Camp Wonder for kids with skin disease. Several PC kids have attened in the past and we know one is going in 2012. There is no cost to parents for the camp. Click here to learn about Camp Wonder. (Thanks to the PC family that reminded us about this - we've posted the announcement each year. Please let us know about your experience with the Camp).

IPCRR Data Published in Journal of American Academy of Dermatology

We are so pleased that the data from the International PC Research Registry has now been published in the Journal of the American Academy of Dermatology (JAAD). The article reports data on the first 254 genetically confirmed PC patients. The registry continues to grow and we continue to learn more. A number of studies have been completed and others are underway thanks to the patients (now over 500) who participate in the IPCRR. If you have not yet taken time to join the Registry (complete the questionnaire, send in photos, complete genetic testing) we urge you to join with other PCers and help us find treatments and a cure for Pachyonychia Congenita. To view the article on the PC website, click here. Then, in the search field put Hansen as the author and 2012 as the year. Leave everything else blank. The article can also be viewed online at the JAAD site. We are so grateful to the authors, C. David Hansen and Mark Eliason (and many others on our Medical and Scientific Advisory Board) who have worked for several years in preparing the data for publication. It is a very significant achievement and will make a difference in PC awareness among dermatologists around the world.

Registration and Call for Abstracts for IPCC 2012 Annual Symposium

Registration is now open for the Int'l PC Consortium Annual Symposium 2012. The fee is waived for those who pre-register. Abstracts may be submitted to PC Project on or before 1 February 2012.

Corporate Matching Funds Programs

Is your company a 'matching funds' donor? PC Project has been accepted as a charity in the NPO Gateway (www.npogateway.com) which coordinates matching funds programs for many corporations. We are grateful that one PC family who is employed at Hewlett-Packard has led the way to open this opportunity for PC Project and has received matching funds authorization from their HP employee donations!

Many companies in addition to HP have this program and we encourage you to ask your employer about the matching funds program. You can let them know that your charity, PC Project, is recognized in the NPO Gateway.

Don't forget GoodSearch.com!

Thank you to so many who already know the good that comes from our Donate (PayPal) and Shop for PC pages at Pachyonychia.org. In this ongoing season of giving, here's a quick reminder of another fast, fun, and free service called GoodSearch.com. It's a great "replacement" for Google searches, AND every search you do or everyday purchases you make using the GoodSearch tools (including GoodDining, GoodShop, and the GoodSearch Toolbar) donates real money to PC Project! All you have to do is register once, add "Pachyonychia Congenita Fund - PC Project" as your charity organization, and simply surf the web as you normally would! (More details at GoodSearch.com for setting it as your browser's default search engine.) Happy Holidays from the PC Project Team!

Success at Stanford University Medical School Grand Rounds

As you know, one of the goals of PC Project is to host 'Grand Rounds' training sessions to more fully educate medical professionals about Pachyonychia Congenit. We were delighted to respond to an invitation from Stanford University for a joint meeting of residents and physicians from UC San Francisco, US David and Stanford. We are very grateful to the four patients who travelled to participate in this meeting held on November 19. One of the patients graciously agreed to write up the experience. We hope many others will be able to participate in these type of meetings. We have a possible date of October 2012 for Salt Lake City and are eagerly seeking other locations.

"In mid November, 4 PCers and 2 scientists accepted the invitation to appear at a Grand Rounds for dermatologists and medical students at Stanford University medical school. The PCers' objective was to enhance awareness of Pachyonychia Congenita.

While the 4 PCers were being examined and answering questions, the 2 scientists were distributing brochures and informing the attendees about the genetics and research of PC. Within 90 minutes, 75 medical professionals and students were equipped to accurately diagnose PC and connect themselves and their patients to the PC network.

Our attendance was appreciated by our hosts. We believe our objective was realized!" (submitted by one of the four participating patients).

iCare4PC 2011 Year-end/Holiday Campaign Launched!

Watch your mailbox for an exciting letter introducing this year's "iCare4PC" Year-end/Holiday Campaign! And let us know what you think!

Calling all artists, kids, parents, friends & family! Rare Disease Art Contest

Share your art that captures the beauty, power, love, pain and courage of the rare disease community. "This is so much more than just a simple contest to me; this is about being a part of something enormous and beautiful in people's lives. This stands to show people who are hurting and ill, that greatness can still be achieved, no matter how ill you become."
PRIZES:Two Grand Prizes will be awarded in each age group:
Children 5-11: $100 Visa Gift Card
Teens 12-17: $250 Visa Gift Card
Adults 18+: $500 Visa Gift Card

Each Grand Prize winner will also receive an iPod Touch.Winners can use the i Pod touch to record a video and share their story about being an artist affected by a rare disease.The artists’ video stories will be posted on www.RareArtist.org.
Click here for details and rules for the contest

Letter Brings Donations for PC Project for research and patient support

Attached is the text of the letter sent to friends and business associates by one PC family. It has resulted in generous donations for PC Project to fund research and patient support. All donations are matched $2-for-$1 through 2011. We're posting the letter as an example of an effective way to invite others to join you in the iCare4PC2011 campaign.