Est.

2000

finding the cure in our time

SFA Newsletter 2012

Board of Directors
Mark Thornton, MD, PhD
President

Presidents Corner
Dear Friends, On behalf of the Sarcoma Foundation of America (SFA), I would like to thank you for taking the time to read this issue of the SFA Newsletter. We sincerely thank you for supporting our mission to advocate for increased research to find new and better therapies for treating patients with sarcoma, and we hope you find the articles in this issue illuminating and inspiring. The past year has been a transformational one in our community! On the drug development front, the first new therapy for sarcoma in over 30 years, Votrient, was approved by the FDA in April! Votrient will prolong the time to progression in nearly all sarcoma Dr. Mark Thornton patients to one degree or another, but more importantly it begins a new era where other therapies will be combined with Votrient to hopefully synergize their actions against the disease. Your SFA was right there when the FDA reviewed Votrient for approval, advocating publically for its quick approval, and in the process of a cordial and respectful advocacy effort with the FDA has opened new doors for future collaborations to streamline drug development pathways for sarcoma and its subtypes. On the research front, the SFA funded our first three-year Conquer Cancer Foundation Career Development Award, is currently funding our sixth Conquer Cancer Foundation Young Investigator Award, and 10 additional SFA sarcoma research grants worth $500,000! These grants are designed to foster the worlds best scientists in the field of sarcoma and ignite ideas for new research avenues to pursue in the quest to find new treatments to eradicate sarcoma. The SFA has continued to advance our mission on many additional fronts including growing our Sarcoma Patient Registry to over 1,400 patients! The Registry is allowing us to match patients in need to clinical trials and is providing outcomes data for epidemiologic research studies to understand better sarcomas natural history. Future plans are to add patient genomic data, which combined with clinical data, will help move us toward the vision one day soon of individualized treatment programs. With your help, our programs have touched the lives of so many. Though we have made progress, there is still an urgent need for further sarcoma research, education and awareness. I encourage everyone to give generously in support of this cause. Thank you, once again, for your continued support. Together, we have the very real opportunity of finding the cure in our time.

John Brooks, MD

Vice President of Scientific and Government Affairs

Thomas Tobin, MD Gary Tomei, Esq.

Secretary

Vice President of Financial Affairs & Treasurer Vice President of Legal Affairs

Stacey Breidinger Matthew Alsante

Executive Director

Chris Connery Anthony Fedorov Alexandra Gillespie Michael Mandell Patrick Mortimer Rita Saverino Romeo Candace Sue Patricia Thornton

Honorary Board Members

Laurence H. Baker, DO Murray Brennan, MD Ed Fry Peri Gilpin Sean Lennon Yoko Ono Marisa Petroro U.S. Senator Mark Pryor Marisa Tomei Martha Wainwright Rufus Wainwright Heather Urich

Medical Advisory Board

Chairman George Demetri, MD Robert Benjamin, MD Charles Forscher, MD Richard Gorlick, MD Lee Helman, MD Marc Ladanyi, MD Jonathan Lewis, MD, PhD Robert Maki, MD, PhD Crystal L. Mackall, MD Alberto Pappo, MD Shreyaskumar Patel, MD Peter Pisters, MD Raphael Pollock, MD, PhD, FACS

Inside this issue:

Presidents Corner ........................................... 1 SFA Partners with NDRI ................................. 2 Rare Disease Lobby Day ................................ 2 Volunteerism ................................................... 3 SFA Combined Federal Campaign Number.... 3 Californians for a Cure.................................... 4 SFA Educational Conference .......................... 4 Annual Gala .................................................... 5 2012 Sarcoma Research Grants ...................... 6 Conquer Cancer Foundation Awards .............. 6 Sarcoma Patient Registry ................................ 6 Fundraising Events.......................................... 7 Mission............................................................ 8 Donate ............................................................. 8

www.curesarcoma.org

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SFA Partners with NDRI to Advance Sarcoma Research

The Sarcoma Foundation of America has partnered with The National Disease Research Interchange (NDRI), a non-profit organization, to provide you with the opportunity to donate tissues and have those tissues distributed to scientists who are studying different aspects of sarcoma and related cancers. Sarcoma patients can donate samples of all forms of sarcoma obtained from biopsy procedures or other medically necessary surgical procedures. Other tissues can be donated too. NDRI coordinators are able to discuss with you the two donation opportunities, either from a surgical procedure or post mortem (after death, like in donation for transplant), and will help you make the right donation decision for you and your family. Tissue donations are coordinated by NDRI from start to finish, ensuring your wishes to donate are made successful. The tissue you donate will be de-identified and will be assigned a unique identification number that only NDRI employees can link to your personal information. The information that will be shared with researchers receiving your donated tissue sample will be de-identified of any personal information and will only include information, such as but not limited to, your age, race, sex, medical and social history, and sometimes clinical information directly associated with the tissue sample you donated. If you are interested in organ and tissue donation, completing your registration as early as possible is vital to success. To learn more about registering with NDRI as an organ and tissue donor for sarcoma research, or to learn more about other donation for research options, please contact an NDRI coordinator today by calling 1-800222-NDRI (6374). An NDRI coordinator is available to speak with you 24 hours a day.

Rare Disease Lobby Day: My Experience on Capitol Hill

By Laura Welch, SFA Member
I am a 33-year-old mother of a 2-year-old boy and wife to a wonderful US Soldier. In July 2011 we moved from Seattle to DC. Hello sunshine! This past August 18 I was diagnosed with Epitheliod Sarcoma (ES), a rare and aggressive form of cancer. I did what anyone in this day and age would do; I consulted the bible that is Google! The prognosis was bleak, to put it mildly. However, I am of the mindset that if this disease is so rare that it has little data available, I will make my own data and try not to dwell on the figures in front of me. When given the option of a below-the-knee amputation, I was also given the best odds of survival I had heard since my diagnosis. It was a nobrainer. My husband cried in shock and I cried with relief! Following surgery I found a small ES support group online. It was this group that alerted me to the fact that February 29 was World Rare Disease Day. A Capitol Hill Lobby Day was coordinated by the Rare Disease Legislative Advocates (RDLA). RDLA partnered with the Sarcoma Foundation of America, the EveryLife Foundation for Rare Diseases, and several other organizations to ensure that rare disease advocates were present on Capitol Hill. With no previous advocacy experience, I was nervous about what to expect and who I would meet. But, I also had a strong urge to want to do something to help. I consider myself lucky as far as ES patients go; I havent had to take any medications or have chemotherapy or radiation treatments. There are many people out there wondering if the latest combination of drugs they are being given will somehow work for them. They needed a voice. During our breakfast meeting in Washington, DC, we were given an overview of the Congressional Rare Disease Caucus and two important pieces of legislation: the ULTRA Act and Creating Hope Act. I found everyone to be so passionate about their work. I was instantly eager to get to Capitol Hill to discuss my newfound knowledge. The legislation made complete sense; how could Congress not want to back them? I attended my first meeting with Danielle, another Lobby Day participant and an experienced advocate. We went to the office of Rep. Jim Moran (D-VA) and spoke with his staff person, Marcia. She was very welcoming. Congressman Moran is already a member of the Dr. Jack Brooks & Rep. Patrick Meehan Rare Disease Caucus and with other Lobby Day participants. Marcia believed he would be supportive of the Acts we discussed. As an introduction to advocacy and Capitol Hill, I couldnt have asked for a better meeting or staff. Next was a meeting in Sen. Jim Webbs (D-VA) office. His staff seemed pleasantly surprised that there was no cost to them involved in the Acts. He asked us what resistance has been faced so far. He could appreciate the simplicity and commonsense approach to both bills and couldnt see why there would be much resistance. We left feeling that he was interested in what we had to say and that the senator would do further research. Finally, in Sen. Mark Warners (D-VA) office we were advised that healthcare is not an issue that the senator usually plays a lead role on, but that he would discuss it further with the members of the Senate who would be able to take action on our behalf. He appeared to appreciate what a significant impact it would have if the FDA could fast-track the drugs needed to treat rare diseases. Overall I was impressed with the time given, questions asked and responsiveness to the ULTRA Act and the Creating Hope Act. The experience highlighted to me that perhaps it is only when we are personally touched in some way that we really understand the importance of speaking out for one another and trying to make a difference. I came away from the day excited that I can use my personal misfortune and voice to help others. I hope to take part in more advocacy work in the future.

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www.curesarcoma.org

Volunteerism

by Sue Embree-Davis, SFA Chapter Leader, California

I expect to pass through this life but once. If therefore there be any kindness I can show, or any good thing I can do to any fellow being, let me do it now, and not defer or neglect it, as I shall not pass this way again. (accredited to both William Penn and Stephen Grellet)

This is a favorite motto of mine. I was surprised to find that its origin can be traced back to the 1600s. I certainly agree that it was good advice back then, and continues to be great advice today. Why volunteer? Here are only a few of the benefits of volunteering: 1. It takes us outside our four walls, often relieving loneliness or boredom. 2. We meet new people, perhaps making a new friend or two. 3. Volunteering is extremely beneficial to the groups, organizations, or companies for which we offer our knowledge, enthusiasm, and hours of labor free of charge. 4. We often receive appreciation from those we help, allowing us to feel needed and useful. 5. If we volunteer for a cause which has touched our lives personally, we have the knowledge that we are helping someone else to weather a difficult time in their life, or to live a better and fuller life than might have been possible before. As I sit here writing this article I am volunteering my time to a cause that is very near to my heart, finding a cure for sarcoma cancers through the efforts of the Sarcoma Foundation of America (SFA). I am the volunteer SFA Chapter Leader for the state of California, and I have had the privilege of serving in this position since 2011. Yes, volunteering with the SFA is helping me to recover and give purpose to some of the pain my family has felt as the result of our battle with a sarcoma cancer. There are an endless number of ways for you to volunteer with SFA in support of the mission to find the cure for these devastating cancers! Here are just a few: If there is no one currently volunteering in your state as the volunteer chapter leader of the SFA (click on your state under SFA chapters to find out) consider taking on this important role Volunteer to assist the SFA Chapter Leader in your state Hold a fundraiser to support SFA (I just raised almost $2000 for SFA by inviting friends and family to recognize my birthday with donations to SFA in lieu of gifts) Distribute SFA materials to your local hospital, schools and universities, cancer centers, community and infusion centers Share your SFA connection with nurses and ask them to share SFA information with their patients Ask your friends and family to JOIN SFA it is free www.curesarcoma.org Ask your friends and family to follow SFA on: Facebook (www.facebook.com/curesarcoma) Twitter (www.twitter.com/curesarcoma) Pinterest (www.pinterest.com/curesarcoma) Help SFA develop online auction opportunities And we welcome any volunteer ideas you have to support SFAs work and mission with your time or contributions! We give of ourselves and our time to others when we volunteer, but over and over I hear people say they receive back so much more than they give! Today, consider volunteering for SFA to make your positive impact on the cure for sarcoma!

SFA Now a Member of the Combined Federal Campaign (CFC #57785)

The Combined Federal Campaign (CFC) is the worlds largest and most successful annual workplace charity campaign, raising millions of dollars each year. SFA asks all federal employees civilian, military and postal to designate SFA CFC #57785 in support of our mission to eradicate sarcoma. Each fall, national and local charities are able to make payroll contributions directly to the SFA. Our CFC number is 57785. All of us at the SFA sincerely appreciate your generosity.

www.curesarcoma.org

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Californians for a Cure

In a first-ever partnership to raise funds for better cancer treatments and care, the Sarcoma Foundation of America (SFA) and the Robert Urich Foundation for Research and Patient Care (RUF) joined in a fundraising event, Californians for a Cure, that was held on November 6, 2011, at the Music Box in Hollywood, California. SFA Co-Founders and Board President and Treasurer, respectively, Dr. Mark and Patricia Thornton co-chaired the festivities with RUF Founder and CEO Heather Menzies Urich, and Peter Hankwitz, CFO, RUF. The evening of hope and recognition was hosted by actor Lewis MacLeod. The Virtue in Medicine Award was presented to Dr. Charles Forscher of CedarsSinai Medical Center for his unwavering dedication to his patients welfare and for his contributions to sarcoma research. SFA and RUF were also honored to present Triumph Awards to Dr. Behrooz Hakimian of Cedars-Sinai Medical Center and Shoshana Silver for their strength and courage in overcoming cancer. Hollywood icon Barbara Eden received the Legend of Hope Award. Ms. Eden, of I Dream of Jeannie fame, has used her celebrity to support a myriad of important causes and is a true philanthropic legend. The Legend of Hope Award recognizes a significant luminary in the American arts community who has made notable contributions of time and energy working to better the lives of those stricken with cancer and by doing so has served as an inspiration to countless patients and their families, said SFA President, Mark Thornton, MD, PhD. Barbara Eden embodies all that and more. Musical performances from singers/songwriters Martha and Rufus Wainwright, American Idol finalist, singer/songwriter and SFA Board member Anthony Fedorov, and sarcoma survivor and musician Charlie Lustman had special meaning at this event as each of the performers have felt the impact of sarcoma in their lives. SFA and RUF especially acknowledge the Californians for a Cure committee for their hard work and commitment to expand awareness of and raise funds for research through this important joint event.

Rufus Wainwright, Barbara Eden & Marisa Petroro

Beverlye Hyman-Fead & Dr. Charles Forscher

Dr. Mark & Tricia Thornton, Barbara Eden, Beverlye Hyman-Fead, Heather Urich & Gregory Harrison

Sarcoma Foundation of Americas Annual Patient Educational Conference Ask the Experts: Advances in Sarcoma Treatment and Research
On April 29 at the Grand Hyatt Hotel in New York, the Sarcoma Foundation of America hosted its 7th Annual Educational Conference for sarcoma patients, their families, caregivers and other medical professionals. SFA President, Dr. Mark Thornton, opened the conference with remarks that highlighted the vital work of the foundation. The day was filled with presentations by experts in all areas of sarcoma, who shared information about the latest advances in sarcoma research and treatment. SFA was honored to present: John S.J. Brooks, MD, FRCPATH Pennsylvania Hospital Topic: Advances in Research in Sarcoma Pathology and SFA Funded Research Kurt R. Weiss, MD University of Pittsburgh Medical Center Topic: Advances in Sarcoma Surgery Crystal L. Mackall, MD National Cancer Institute Topic: Advances in Sarcoma Immunotherapy Marc Landanyi, MD Memorial Sloan-Kettering Cancer Center Topic: How Funding Basic Science Can Lead to New Targets & Treatments George D. Demetri, MD Dana-Farber Cancer Institute Topic: Future Directions of Sarcoma Therapy Sarcoma patients and their families traveled from across the country to learn about the latest breakthroughs in sarcoma research and treatments including genetic findings, SFA funded research, clinical trials, and the origins of sarcoma. The conference in now available to view on our website at www.curesarcoma.org.

John S. J. Brooks, MD, FRCPATH, Marc Ladanyi, MD, Kurt R. Weiss, MD, Crystal L. Mackall, MD & George D. Demetri, MD

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www.curesarcoma.org

SFA Annual Gala Celebrated 10th Anniversary in Style

The Sarcoma Foundation of America celebrated the 10th anniversary of the annual gala and was honored to acknowledge the co-chairpersons, Kathryn Quadracci Flores, MD, Raja M. Flores, MD, Laura Hagan, Paul A. Meyers, MD, and Addie & Gary Tomei, and the Gala committee for their great success. SFA is also honored to thank all our generous sponsors, including our major sponsors Merck, ZIOPHARM Oncology, Threshold Pharmaceuticals, the Altman/Kazickas Foundation, Infinity Pharmaceuticals, Millennium Oncology, Pfizer, Robert Norton, Michael Porter and Katherin Gehl. The festivities were hosted by Julie Chang, entertainment reporter for WNYW/Fox 5 in New York, who joined the gala for her second year as the Mistress of Ceremony. Dr. Marc Ladanyi, Memorial Sloan-Kettering Cancer Center, received the 2012 Nobility in Science Award in recognition of his continued dedication to the science and research in finding the cure for sarcoma. Lisa and Mac Tichenor, founders of the What Would Willy Want Foundation (Quad W), were presented with the 2012 Vision of Hope Award in recognition of their philanthropic commitment to finding new and better treatment options for sarcoma patients. Previous SFA Courage Award recipients, Rita Saverino Romeo and Mark Herzlich, New York Giant Super Bowl XLVI Champion Linebacker, presented the 2012 Courage Award to Maura Cesarini, McKenna Eileen Coyle, Paul Icovitti, Wendy Landes, Robert Russo, Rhoda Sapers and Dr. Kurt Weiss in recognition of each of the award recipients heroic battle with sarcoma. Guest performances by Rock of Ages Tony Award nominee and former American Idol finalist Constantine Maroulis and 2012 American Idol finalist Elisa Testone were well received. The powerful stories, speeches and resolve toward finding the cure for sarcoma reaffirmed SFAs determination and mission.

2012 Courage Awardees and Presenters: Rita Saverino Romeo, Dr. Kurt Weiss, McKenna Eileen Coyle, Rhoda Sapers, Maura Cesarini, Robert Russo, Wendy Landes, Mark Herzlich, Barbara Icovitti & grandson Nathan

Addie & Gary Tomei, Laura Hagan, Lisa & Mac Tichenor

Dr. Tom Tobin, Dr. Jack Brooks, Tricia & Dr. Mark Thornton, Alex Gillespie & Matt Alsante

Doctors Raja & Kathryn Flores

Dr. Marc Ladanyi, Anne-Sophie Ladanyi & Dr. Maureen Zakowski

Mistress of Ceremony, Julie Chang

India Rogers-Shepp, Anne-Sophie Ladanyi & McKenna Eileen Coyle

Constantine Maroulis, Elisa Testone & Mark Herzlich

www.curesarcoma.org

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Sarcoma Foundation of America 2012 Research Grants

Alexander Burdo/ZIOPHARM Research Award
William A. May, MD
Associate Professor Childrens Hospital Los Angeles Oncogenic Targets of Hedgehog-GL/1 Activation in Ewing Sarcoma

Sarcoma Foundation of America Research Award

Targeting ETV1 in Gastrointestinal Stromal Tumor (GIST)

Ping Chi, MD, PhD

Assistant Member and Assistant Attending Physician Memorial Sloan Kettering Cancer Center

Alexander Burdo Research Award

Michelle A. Hurchla, PhD
Research Instructor Washington University

Targeting the Hedgehog pathway to inhibit osteosarcoma growth through dual effects on tumor and microenvironment cells.

Conquer Cancer Foundation Awards

Career Development Award
Mrinal Gounder, MD
A Phase III, double-blind, randomized, placebo-controlled trial of sorafenib in desmoid tumors or aggressive fibromatosis (DT/DF) Memorial Sloan-Kettering Cancer Center

Mandell/Kropp Run for a Sarcoma Cure Research Award

ROS1 kinase as a candidate molecular target in angiosarcoma

Jonathan Pollack, MD, PhD

Young Investigator Award

David Van Mater, MD, PhD

Associate Professor of Pathology Stanford University

A role for injury in Sarcomagenesis Duke University Medical Center

Mark Herzlich Research Award

Jason T. Yustein, MD, PhD
Assistant Professor Baylor College of Medicine

C-MYC Target Gene Network in the Ewings Sarcoma Cancer Stem Cell

Kate McGarrigle Memorial Research Award

Differentiation Therapy for Rhabdoid Tumors

ASCO Phil McCarten 2012

2012 Conquer Cancer Foundation Top Donors

Nancy Daly, Dr. Martin Murphy, Dr. Mark Thornton, Dr. Michael Link

Sandra Orsulic, PhD

Director, Womens Cancer Biology Cedars-Sinai Medical Center

Sarcoma Foundation of America Research Award

Desmoplastic small round cell tumor: validation and further development of novel active compounds emerging from high-throughput chemical screens and establishment of xenografts for preclinical studies

Call for Grants

We will begin accepting grant requests in October 2012. Grants of $50,000 are available to cover equipment and supplies in support of research on the etiology, molecular biology, pathogenesis, diagnosis, and treatment of human sarcomas. Preference will be given to proposals that focus on novel agents and/or promising molecular targets. For more information please contact Lori Hoffman at lhoffman@curesarcoma.org. * application deadline is January 31, 2013.

Heather Magnan, PhD

Instructor Memorial Sloan-Kettering Cancer Center

Sarcoma Foundation of America Research Award

David M. Loeb, MD, PhD

Preclinical Testing of Compounds Identified in a High Throughput Screen as Potential Chordoma Therapies Associate Professor, Oncology and Pediatrics Johns Hopkins University

Sarcoma Foundation of America Research Award

Polarity and Ploidy in Peripheral Chondrosarcoma

Kevin B. Jones, MD

Assistant Professor of Orthopaedics University of Utah Huntsman Cancer Institute

Join the Sarcoma Patient Registry

Help us defeat sarcoma by joining our Sarcoma Patient Registry today and with our collective strength we will make a difference. If you are diagnosed with sarcoma and would like more information about joining the registry, please call 1-866-501-6870 or email sfa@registrypartners.com.

Sarcoma Foundation of America Research Award

H. Phillip Koeffler, MD
Mark Goodson Chair in Oncology Research Cedars-Sinai Medical Center

Study of miR-26a-2 gene as a therapeutic target of human liposarcoma

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www.curesarcoma.org

Fundraising Events

Buds Run, IL

Buds Run, IL

Super Heros Run, DE

Ronny Gras, IL

5k Run/Walk for a Sarcoma Cure, FL

9th Annual Bassett Tournament, CT

Olivia Lives, FL

Kicking it for a Cure, NY

Cup of Hope, FL

Rachael Morris Runs in Memory of Beth Van Dyke, NJ

Upcoming SFA Fundraising Events Nationwide

Oct. 14, 2012 Oct. 21, 2012 Skate for a Sarcoma Cure in Memory of Darell Martin, Vandalia, Ohio 5th Annual Florida 5k Run/Walk for a Sarcoma Cure, Plantation, Florida

Gifts made to memorialize a loved one are greatly appreciated and will be acknowledged to the individual or family. They are a heartfelt way to express your love and appreciation. Gift amounts are kept confidential. Honoring a loved one who is battling sarcoma and/or celebrating the life of someone who has survived is a gift in itself. A personal webpage allows people to share memories as well as donate to the Sarcoma Foundation of America and build a legacy committed to fighting sarcoma. If you are interested in setting up a Memorial or Honor page, please contact SFA Program Specialist, Cindy Saunders at csaunders@curesarcoma.org or 301-253-8687.

Watch for more information about the 11th Annual Gala coming in the spring of 2013.

www.curesarcoma.org

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Our Mission
The mission of the Sarcoma Foundation of America (SFA) is to advocate for increased research to find new and better therapies with which to treat patients with sarcoma. The organization raises money to privately fund grants for sarcoma researchers and conducts education and advocacy efforts on behalf of sarcoma patients.

Donate To SFA
Help us fund future sarcoma research by contributing to the Sarcoma Foundation of America. The SFA is a national, nonprofit advocacy group for the increased research and treatment of sarcoma. (Tax ID # 52-2275294)

Cut out this form and mail it with your donation or donate online at www.curesarcoma.org Yes. I would like to make a donation to the Sarcoma Foundation of America In honor of: Name: Address: City/State/Zip: Phone: Email: Contact the SFA about the following ways of giving: Stock Gifts Giving appreciated stocks or bonds are excellent ways to support the foundation. Planned Gifts Wills, life insurance policies, property, trusts, gift annuities and retirement plans are examples of planned gifts which provide significant tax savings as well. We will be happy to provide you with general information about how to incorporate a planned gift to the foundation into your estate plans. Matching Gifts Many employers will match your charitable contribution. This is an extremely effective way to maximize your donation to our cause. Check with your human resources office today to see if your charitable donation can be matched by your employer. Please charge my credit card: MasterCard CID # (3 digit number found on the back of MasterCard and Visa) CID # (4 digit number on front of American Express cards) Credit Card No.: Signature: Mail to: Sarcoma Foundation of America, 9899 Main Street, Suite 204, Damascus, Maryland 20872 or fax it to: 301-253-8690 Visa American Express Amount:

In memory of:

Expiration Date:

finding the cure in our time www.curesarcoma.org

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Survivor Photo, Ask the Experts Educational Conference 2012

Est. 2000

9899 Main Street, Suite 204 Damascus, Maryland 20872