Saturday, August 23, 2014

Crater Lakes Golf Course At The Homestead Resort

Midway, Utah

4TH ANNUAL

CHARITYCHARITY GOLF GOLF

TOURNAMENTTOURNAMENT

GOLD SPONSORS

Mantyla McReynolds, CPA and

Zions Wealth Management

HOLE SPONSORS

Zeb Lowe Private Wealth Advisor Zeb@Coigncapital.com 12012 S 700 E., Ste. #100 Draper, UT 84020 Tel: 801.676.4570

DAVID OSBORNE

801-566-6633

WWW.TNW.COM

Matt Johnson 801-844-7867

matt.johnson@zionsbank.com https://www.zionsbank.com/personal/zwa.jsp

Jeffery Vincent 801-561-4980

David Frey Trent JefferiesDavid Frey Trent Jefferies 801801--274274--20452045

RAFFLE AND PRIZE SPONSORS HOLE SPONSORS

Jody Wilkinson Acura at 1111 S. Main St in Salt Lake City,

is your premier retailer of new and used Acura vehicles. A

native of SLC, Jody Wilkinson was raised in the automotive

industry. At the age of 34, Jody and his family opened Her-

itage Acura in 1986. Since then Jody has served as General

Manager at the same location for over 25 years. Today Acu-

ra has grown into a global brand, and Jody Wilkinson Acura consistently achieves the highest loyalty in

the country among Acura dealers. Jody Wilkinson Acura has been awarded the Dealership of Distinction

12 times. They believe in a Culture of Client Care and that each Client is unique and entitled to respect.

http://www.jodywilkinsonacura.com/

HOLE-IN-ONE SPONSOR

www.pachyonychia.org

801-365-0400

www.perelson.com

Fitness

Fitness and Outdoor Living Products

www.impex-fitness.com

Look for Marcy Fitness products in your local sporting goods store.

TOURNAMENT SPONSORS

801-269-1818 — www.mmacpa.com

Mantyla McReynolds began in 1989 when Don Mantyla and Kim McReynolds had a vision of creating their own business, their own legacy. Born leaders, Don and Kim have successfully expanded the firm to over 30 employees by hiring bright thinkers and creating a positive work environment. Mantyla McReynolds is a local CPA firm, based in Salt Lake City, Utah. The firm has the experience and expertise to help businesses through-out Utah, the United States and the world, and it has serviced small business, middle-market and international organizations for over 20 years. Mantyla McReynolds is a BDO Seidman Alliance firm, offering experienced and accessible service teams, world-class engagement management and a focus on quality and efficiency.

Mantyla McReynolds LLC is nationally ranked by Accounting Today as one of the top 100 Best Accounting Firms to Work for in 2011 as well as locally by Utah Business Magazine as the Best Companies to Work For. Mantyla McReynolds is also a member of the BDO Seidman Alliance. With BDO being the 5th largest interna-tional firm, our associates have the best of both worlds: local firm culture and extensive international firm re-sources.

With a commitment to timely service and communication, the professionals at Mantyla McReynolds have the experience and knowledge to help you succeed. As members of the PCAOB and CPCAF, Mantyla McReynolds is required to undergo rigorous quality control reviews. As a result of these reviews, the firm has obtained un-qualified approval to continue performing accounting and auditing work for business clients.

Matt Johnson 801-844-7867

https://www.zionsbank.com/personal/zwa.jsp

ZWA's services are designed for individuals and families; private business owners; corporations, and foundations, endowments and nonprofits. ZWA's approach combines forward-looking economic analysis and risk sensitivity with an investment strategy targeted to meet each client's specif-ic goals and aspirations. Zions offers wealth management services through various affiliate companies and non-bank subsidiaries including Contango Capital Advisors, Inc. (Contango), which operates as Zions Wealth Advisors in Utah and Idaho.

PRESENTING SPONSORS

The foundation of Jackson & LeRoy Remodeling originated in 1998 when Jeremy Jackson and Brandon LeRoy met in their framing class at Brigham Young University. Before en-tering school, Jeremy spent his younger years perfecting his skills as a finish carpenter in the remodeling industry. Bran-don grew up following his father’s footsteps in the construc-tion industry, working as a superintendent/finish carpenter on premier projects in the resort markets of Aspen, Vail, and Jackson Hole. After completing their Construction Management/Business degrees, Jeremy moved to Las Vegas as a project manager in charge of the development and construction of some the city's most exclusive golf course communities. Brandon went to work managing the luxurious Stone Gate neighborhood in Provo, Utah. With 23 years of experience in the construction industry they reunited in 2005 to found Jackson & LeRoy Remodeling. They have since evolved into one of Salt Lake City's premier remodeling companies. Jeremy and Brandon work seamlessly and efficiently with trade professionals and suppliers as a team to oversee every detail—anticipating challenges, providing solutions, and ensuring your complete satisfaction. They create inspiring remodels and challenge themselves everyday in their pursuit to perfect the craft of remodeling.

Jeremy Jackson &

Brandon LeRoy

(801) 277-3927

www.jacksonandleroy.com

Since 1994, we've developed and organized our retail brands and parent company from the ground up, gearing them toward providing long-term growth opportunities for individuals to live their dreams. We believe that we can make a positive difference in people's lives through our products, stores, service and people. PW Cos. was established in 2007 and is headquartered in Sandy, Utah, a suburb of Salt Lake City. It's the par-ent company for Del Sol, a retail brand specializing in color-changing clothing and accessories, and its sister brand, Cariloha, a retail brand centered on bamboo-based products. PW Cos. has an international footprint, overseeing the operations of more than 150 freestanding retail stores in 25 countries and growing. We created product lines to make people smile and to conjure memories and experiences from their vacations. Every time someone puts on one of our products for the day, they remember their getaway to San Diego, Aruba, or St. Thomas - it's the memories, the smiles, and the joy of it all. Given our inauspicious beginnings in a cart in a shopping mall, PW Cos's success story would give even a hard-boiled Wall Street capitalist something to smile about. And that's exactly what President and CEO, Jeff Peder-sen, and company, try to do all day long-especially when the sun is shining!

www.delsol.com www.cariloha.com

1st Place Team

Four $65.00 certificates at the Homestead Pro Shop and four CaRiLoHa golf shirts

2nd Place Team

Four $40.00 certificates at the Homestead Pro Shop and four CaRiLoHa hats

3rd Place Team

Four $23.00 certificates at the Homestead Pro Shop and four CaRiLoHa socks

Time Location Contest or Activity

7 am Registration Goodie Bags courtesy of Zions Bank and PC Project

7 am Fannie’s Canopy Continental Breakfast

7 am Driving Range Open

7 am Putting Green Open

8 am Golf Carts Shot Gun Start

1 pm Pavilion Buffet Lunch sponsored by Mantyla McReynolds, CPA

Location Par Sponsor Activity

Hole 1 5 Mantyla McReynolds CPA Team Photos

Hole 2 3 Del Sol/CariLoha Hole-in-One and Closest to Pin

Hole 3 4 Jackson & LeRoy; Leverage

Hole 4 4 Dixon Golf Aurelius Drive Challenge

Hole 5 5 Great Basin Insurance

Hole 6 4 Coeign Capital Advisors

Hole 7 5 Zions Wealth Management Long Drive

Hole 8 3 Jody Wilkinson Acura Hole-in-One NEW 2015 ACURA

Hole 9 4 VendRx

Hole 10 4 PC Project; Disney Disney Tee Toss Special Raffle

Hole 11 4 Prince, Perelson & Associates

Hole 12 3 ARB; Utah Agency Insurance Hole-in-One and Closest to Pin

Hole 13 4 Teerlink Cabinet

Hole 14 3 Dixon Golf Hole-in-One and Dixon Challenge

Hole 15 4 Thorpe, North & Western

Hole 16 4 Zions Bank

Hole 17 5 Krank-It Golf Long Drive and Krank-It Contests

Hole 18 4 PC Project; Impex Fitness Power Puff Special Raffle

TOURNAMENT CONTESTS AND PRIZES PC PROJECT CHARITY GOLF TOURNAMENT 2014

WELCOME and THANK YOU!

Thank you for participating in the Fourth Annual Pachyonychia Congenita Charity Golf Tourna-ment. This is one of our most important fundraising events each year. Beginning with only three patients in 2004, the PC Project registry now includes over 1400 pa-tients in more than 60 countries. This patient base and the collaboration of physicians and scien-tists has led to major goals including multi-center, international clinical studies for PC. Even though many of the specialists donate their time for our cause, these trials cost millions of dollars and your support of our tournament truly makes a difference. Clinical Trials—that is our goal so that effective treatments can become available to patients. We are working hard to learn more about the processes of keratins, which will hope will eventually lead to the development of effective treatments. We are pleased to have several clinical trials and studies in progress this year that are showing promise! We are very appreciative to our sponsors as well as your individual participation. All of the funds raised (and the $2-for-$1 matching challenge) will help continue this unique approach to patient advocacy and collaboration in research. We hope you will make this an annual event. We know our successes will benefit many be-yond the Pachyonychia Congenita community. Mary Schwartz, Director

Normal keratin filaments form a strong structural network (left) that enables cells to with-

stand pressure and stretching. Mutant keratin proteins form clumps (right), resulting in

weak cells that break open under pressure. Images courtesy Prof. W.H. Irwin McLean,

University of Dundee, Scotland. Keratin filaments are green, and cell nuclei are blue.

Clinical Trial News... PC Project is moving steadily forward in "translational research" to move laboratory discoveries into treatment for patients in numerous studies and clinical trials.

In October 2013, TransDerm announced approval by both the FDA and

Stanford University IRB for the topical rapamycin clinical trial for PC-K6a

patients. The primary objective of this study is to assess the safety of topi-

cal sirolimus (TD201) 1% for plantar keratoderma for the treatment of

pachyonychia congenita. This study would also like to assess the potential

of sirolimus (TD201) to improve the clinical severity of plantar keratoder-

ma, including pain. In February of this year, 15 patients completed their

initial trip to the Stanford clinic and have enrolled in the six-month clini-

cal trial for topical sirolimus under the clinical direction of Joyce Teng, MD using the topical

drug manufactured by TransDerm, Inc. of Santa Cruz, CA. We are grateful to Pfizer for do-

nations of the active drug product.

Recent Publications… Publications in peer-reviewed scientific journals provide an opportunity to publish accurate information on PC and invite other researchers to join collab-orations in PC research. Here are a few examples of recent articles.

All of these articles are available to you on our website at www.pachyonychia.com

What’s been happening lately at PC Project...

The PC patient community has a direct impact on the research goals and direction of PC Project in developing treatments and cures for PC. As part of this effort, 15 PC patients trav-eled to Salt Lake City on August 8-9, 2014 to provide biopsies for PC research studies. The biopsy collection was conducted in clinic by C. David Hansen, MD staff with Roger Kaspar, PhD handling the processing and shipping of the samples to the various research sites.

Some of the samples will be used in a PC Neuroanatomy study to be conducted at Johns Hopkins University under the direction of Michael Polydefkis, MD.

Under the leadership of CEO Roger Kaspar, PhD, TransDerm con-tinues to lead the way in PC research and will conduct additional mircroarray studies with these new samples studying the affect of the PC mutation in up and down regulation of other genes.

Laure Rittié at the University of Michigan will use PC samples to create 3-D cell images to study the effects of PC on nerves, sweat glands and other cellular structures which may be linked to the intense pain suffered by those with PC.

Other groups around the world are also joining in collaborations for PC research including Imagine Institute in Paris, France, Uni-versity of Dundee, Scotland and many other leading institutions.

2386 East Heritage Way, Suite B Salt Lake City, UT 84109

877-628-7300 info@pachyonychia.org www.pachyonychia.org

THANK YOU for participating in the

2014 PC Charity Golf Tournament.

All donations to PC Project are gratefully

received and matched $2-for-$1. All donated

funds are used solely for research and

support services.

BOARD OF TRUSTEES C. David Hansen, MD (Dermatologist)

Roger L. Kaspar, PhD (Scientist and CEO) David Owens (Attorney at Law)

Lex L. Udy, PhD (Scientist and CEO; retired) Janice Schwartz (Patient Advocate)

Craig T. Vincent, Esq. (Attorney at Law) B. Jackson Wixom (Sr Vice President)

MEDICAL AND SCIENTIFIC ADVISORY BOARD

Sherri Bale, PhD—Maryland, Philip Gard, MD— England, David Hansen, MD—Utah, Peter Hull,

MD—Canada, Roger Kaspar, PhD—California, Birgitte Lane, PhD—Singapore, Irwin McLean, DSc, FRSE—Scotland, Leonard Milstone, MD—Connecticut, Edel O'Toole, MD, PhD—England, Amy Paller,

MD—Illinois, Dennis Roop, PhD—Denver, Frances Smith, PhD—Scotland, Eli Sprecher, MD, PhD—Israel, Maurice van Steensel, MD, PhD—Netherlands, Jean Y. Tang, MD, PhD—California

PC PROJECT STAFF

Holly Evans, Assistant Director Janice Schwartz, Patient Advocate (volunteer)

Mary Schwartz, Director (volunteer)

PC PROJECT CHARITY GOLF TOURNAMENT 2014

PC Project, 2386 East Heritage Way, Suite B

Salt Lake City, UT 84109

PC Project has a small office space in this lovely building located in Salt

Lake City, Utah. Our co-tenants provide all utilities

(including phone service) as a donation to the PC cause.