2011 a nnua l report

loeys-dietz sy n drom e fou n dation

Ja nua ry 1 to december 31, 2011

to be confident or courageous

dearfriends,
This was our year to take heart - to find courage to make big changes and confidence to move forward into big initiatives. It was a season of growing the Loeys-Dietz Syndrome Foundation (LDSF) into a bigger, better and more supportive organization that spent more time focusing on our mission - to encourage education, foster research and provide support. In 2011, we moved our headquarters from Ohio to Maryland, hired our first part-time, contracted staff person to support our mission, and went international with a formal partnership with the LDSF-Canada and outreach to our European and Asian communities. We continued our collaborative work with other organizations supporting connective tissue disorders, supported fundraisers, fostered communication through email, Facebook and newsletters, represented LDSF at a variety of medical conferences and answered all medical inquiries. The growth and success we achieved this year were made possible by you, our generous donors, tireless volunteers and dedicated partners. Your passion, dedication and support inspires us to strive for a community where no one impacted by LDS feels alone, where the medical community is informed and knowledgeable about LDS and where research makes a difference in the lives of our families. Thank you for taking heart - for being confident in us and having the courage to walk with us through this journey. Take Heart,

ourmission
to bring greater awareness to Loeys-Dietz syndrome (LDS) by encouraging education, fostering research and providing support for those impacted by LDS

Gretchen Oswald
President

ourorganization
In 2011, a big move from Ohio to Maryland required much dedication and planning by our Board of Directors to keep up with LDSF business as usual. Much of our funding and efforts this year were dedicated to this transition and establishing a professional team, upto-date protocols, and a technology platform for organizational purposes all allowing us to better focus on and meet constituent-related activities now and in the future. Select accomplishments include: hired first half-time contract employee moved headquarters to Baltimore administratively - hired a bookkeeper and implemented a constituency management program found key volunteers to oversee our Forum, assist with newsletter editing and head fundraising committee strategically planned as a board of directors facilitated the founding of the LDSF-Canada

encouragingeducation
As we grow, we see diverse educational needs including educating newly-diagnosed families and their communities, updating families on new health outcomes in LDS, and encouraging physicians with the newest treatment strategies. We continue to look for collaborations and new opportunities to get the word out, both nationally and internationally. Select accomplishments include: developed an informational packet for medical professionals facilitated a medical webinar for the Shriners Network, which became a DVD for distribution to other medical professionals worked with the TAD Coalition to spread awareness regarding treatment guidelines for Thoracic Aortic Disease (www.tadcoalition.org) added video presentations to our web site teamed with LDSF-Canada to have a wide-spread presence at professional conferences, reaching approximately 1,300 medical professionals and including 700 one-on-one LDS presentations and packets distributed assisted volunteers in putting on 5 major fundraising events where LDS information was shared with friends, family and community members

ourgoals
grow and diversify the board of directors expand online presence explore international partnerships

ourgoals
increase conference presence collaborate with other organizations develop new resources - incl. fact sheets translate resources into different languages

fosteringresearch
Medical professionals learn from their patients every day allowing new patterns in LDS patients to be identified and new questions to be answered. From mouse models and laboratory experiments to patient questionnaires, more knowledge was gained about Loeys-Dietz syndrome. Each new thing we learn helps us to improve the quality of life for our patients. Select accomplishments include: saw a new LDS gene identified - SMAD3 approximately 25 new medical journal articles were published on LDS in 2011 fostered patient participation in Johns Hopkins bone metabolism research begin preliminary groundwork for development of LDS biobank/research registry

providingsupport
Welcome to the family our favorite post on the forum! We hope that on your lifes journey with LDS, you find connectedness through the LDSF. Thank you for supporting one another through all of our media outlets your incredible spirits of perseverance and generosity to the Foundation and to each other continue to inspire and motivate us. Select accomplishments include: increased regular communication with more than 20 email blasts to over 500 constituents 3 newsletters regularly updated Facebook, where we have 847 likes and more than 58,000 post views added 206 new registrants to the Forum, which now has over 2,250 posts

ourgoals
develop research grant program oversee a LDS registry & biobank initiative

ourgoals
utilize technology and social media support fundraisers and their efforts increase connectedness of members

oursupporters
The Loeys-Dietz Syndrome Foundation is supported by private contributions from corporations, foundations and individuals. From the bottom of our hearts, we say thanks to these supporters who enabled our accomplishments in 2011.

memorialgifts

Jane Clemmons: Howard, Christopher Robert Hogan: Hogan, Marla Daniel Moyer: Anstine, John & Miriam Astrakhan, Elena Barlup, Donna Baskin, Sherry Berlin, Cheston & Anne Best, David & Joy Bieber, Glen & Judith Bitner, William & Nancy Brace, Raymond & Patricia Buchan, Mary Lou Buchan, Samantha Buskirk, Max & Mary Caputo, Leesa Ellenberger, Kenneth & Joann Ercole, J. Anthony & Tressa Farrar, Ted & Sarah Godfrey, Debra Gubersky, Leon Hench, Robert & Tanya Henschke, William & Gail Jennings, Cary O. Kadel, Gregory & Susan Katsonis, George & Doris Kimatian, Stephen & Pamela Kirby, Ronald & Louise Koch, Kenneth & Elizabeth Kokal, Margery M. Krizan, Jerry & Suzanne Lehman, Carl R. Lenker, Rachel Luetchford, Brian & Deloris Manmiller, Raymond Margel, Dennis & Betty

Mastrosati, Carol McCracken, Sherri McLain, Donna Measley, Tony & Pamela Ranck, Jr., J. Harold & Diane Rudy, F.R. & D.R. Shebosky, Susan Smith, Thomas & Deborah Spencer, Peggy Sponaugle, William & Carol Wagner, Christopher & Rachel Weber, Eden Weiser, Annette Wilson, Melissa Wright, Martha Deborah Ports & Betsy Cates: Ports, Rachel Erin Ramsey: Ramsey, Jodi Janet Tilbury: Duer, David & Patricia Mercer, Damon & Cheryl

honorgifts
Daniel Astrakhan: Astrakhan, Elena Caroline Bange: Gilliam, Mark & Anita Anthony Brescia: Brescia, Cristin Logan Fabrizio: Breslin, Michael & Jennifer Alexander Galli: Bhadare, Sue Gabi Guaipatin: Gomes, Malu Pereira, Antonio

Griffith Family: Chmielewski, Michelle Woodward, Mark Miriya Emma Chua Healing: Chua, Catherine C. Sara Hackney: Waid, Sheila Cathleen Nilles: Nilles, Tony Pam & Johnny Martin: First, Robert & Deborah Olszyk Family: Leaser, Christopher Andrew Pape: Balthaser, Susan Trey Price: Price, Blanca Elizabeth Sammon: Keller, Marjorie A. Alexander Utz: Rumschlag, Joseph & Lesley Utz, Beth & Derik Isabella Williams: Lowe Family Foundation

donors

Abuleos Accardo, Anne Accent Dental Adams, Larry & Carolyn Sue Adler Planetaruium Adley, Senator Robert Adoni, Murray & Devora Agency, Gabriel & Kimble Alberts Jewlers Alderman, Glynn & Judith American Girl

Americlean Andi Villarreal Augustana Lutheran Church Foundation B.B.Bows Backhus, Edward & Charlene Badgley, Lisa Baker, Ernest & Kristin Bange, Albert & Joan Bange, Jeffrey & Stephanie Bange, Steven & Jeannette Bange, Wesley & Jenny Barnes, Kelly Batey, Steven & Linda Bath & Body Works- Stephanie Phillips Bayou Fitness Products, LLC Becky & Mark Mild Believers Sunday School Class Bellaboos Beltz, Richard Benton United Methodist Church Benton, George & Susan Bernard, Lester & Susan Bernie & Gail Naul Bernstein, Jerry & Shelley Bertucci, MD, Peter Biehl, Bill Biehl, Christopher & Lauren Bird, Kenneth Birdsong, Jason Blaauw, Heino & Karen Blanchard, Lara Boilermakers Local 374 Bolas, Rui Bonomolo, Aimee BP Fabric of America BP Foundation, Inc. Bradley Murchison Kelly & Shea LLC Brayman, Lynn Brown, Jerry & Kathryn Burns, Matthew G. Cabes, Leon & Cheryl Cain, Danny & Mimi Calamusa, Robert & Judy Cannon, Michael & Leslie Carey, Kathy Carney, Edward & Melinda Carper, Forrest & Arlene Caruso, Daniel & Karen Caruso, Susan

Cecil, Alan & Tara Chandler, Lauren W. Chicago Bears Chicago Blackhawks Chicago Bulls Chicago Cubs Chicago White Sox Chicago Wolves Chicot Farms Chic-Fil-A Children Museum-Indianapolis Childress, Alice Chipolte Chiquet, Cyndee Churilla Insurance Agency Ciesla, James & Margaret Clark, Tabitha Clemmons Family Cobb, C.P.A., Lisa K. Colella, Carole S. Colon, Jeanne S. Colon, Jr., Adrian Condon, John & Jillian Coren, Michael & Susan Coren, Richard & Elaine Corrigan, Casey Coursey, Ardath Kay Kasner Coursey, Leah Courtyard Hotel in Valparaiso Covington Co., Inc. Craft, B. J. & S. D. Craig, June Cromer, J. Crouch, Rhonda Crowell, Alicia Crumpton, R. L. & Karen Culbertson, William Cusimano, Salvador & Mrs. Sal Dariy Queen Davis, Ted & Maureen Deep River DeLasCasas, Charles & Jeanne Dennis, April Nicole Dennis, Richard & Darlene Diamond, Paul & Patricia Dicks Restaurant Dobson, Sharon Dossaji, Hussein & Huzefa Double M Cattle LLC

Douciere, Penny Duncan, Gene & Edith Durbin, Paul Early, Jr., Charles & Mery Ellen Earp, Wayne & Rebecca Edwards, Richard & Rita Ellis Sr., Robert & Janette Ellis, Allen & Peggy Eriks, Robert & Gwendolyn Erwin, Jerry & Dianne Ethridge, Melanie Fairfield INN in Indianapolis, IN Fales, Margaret A. Farmer, Gerda L. Feducia, Walter & Beatrice Field, Judi R. Fielding, David First United Methodist Church of Bossier Forney, Ronald & Jill Forrester, Francine & Ralph Francoeur, Dennis & Diane Fuller, Avis M. Fuller, Peggy Gallerid Portraits Garcia, Jesus & Doreen Garlin, Jacquenette L. Garvey, Christopher & Lauren Garvey, Judith Gary Norris Plumbing, Inc. Gay, Kathleen Gehling IV, Martin & Sarah Gleason, Marie Gleason, William & Rosemary Glow Golf Graves, Cara Gray, Delaney Great Escape Griffith, Randal & Gwendolyn Griffith, Randall & Polly Griffith, Randy & Sarah Guffey Insurance Services Guffey, Kevin & Lori Gumbo To Geaux Gutierrez, Juan & Sara Gutierrez, Maria H&H Contracting Haase, Howard Hackney, Sara Hall, Joyce

donorscont.

Hankins, Kenton & Julie Hanley, Karyn Hartman, David & Jeanne Hartman, Martha N. Hartwig, Todd Hayes, Jerry & Brenda Hays, James N. Hays, Keith & Barbara Hays, Larry Helms, Barbara M. Helms, Marion E. . Hixson, Chris & Tammy Hobart Art Theater Hobart Tanning Hoernig, Donald & Diane Hollingsworth, Elizabeth Hooters Hootnick, Cynthia Hudak, Particia Hughes, Lt. Col. Ret. Ralph M. Hunter, Mark & Sharon Indiana Beach Indiana Fever Indianapolis Colts Janey Macey & Associates Jankowicz, Katie JJs Pizza-Hobart Joffee, Margaret Johnson, Tamara Johnson, Ted & Nancy Jones, Edward Jordon, Jason Jump Central- St.John, Ind. Jump Zone- Crown Point, Ind. Jurgens, Brian & Kate Jusko, Kelly Katz, A. Keith & Evelyn Keenan, Meredith Kennedy, Mr. & Mrs. Lester Kensla, Robert & Cynthia Newman Kielbasa, Edward & Sherri Killian, Edna Kirtis, Robin Klock, Todd & Andrea Knepp, Rose Knesek, James & Julie Koren, Tedd & Beth Korzenecki, Kennith & Monica

Kovac, Victor B. Kussy, Michael & Maria L & L Family Investment LLC Lagacy, Thomas Lake Area United Way Landry, Kerry A. Landry, Sue Leahy, Terry & Paula Lenzo, Jeremy & Allison Levy, Patrick & Kellie Line Avenue Pharmacy Little, Lisabeth D. Lollar, Joshua & Shaela Lolo Doll Loomis, Kathryn L. Lovejoy, Julie Lucas, Jason & Sarah Luken, Paul & Jan Lutgen Family Lutgen, Anthony & Theresa Macdiarmid, Trey Machnikowski, Thomas & Nancy Maneschi, Laura Martin, William Martini, Marie Marylynns Bakery Matteo, Sheva & Catherine McCamey, Ronald & Trudi McCullough, Mr. & Mrs. Mark McKellar, Bill & Sandy McQuillar, April Meagher, John Meagher, Michael & Cathey Melancon Jr., Curtis & Janice Mercier & Associates, Inc. Merrit, Richard Mid City Pediatrics Miller, Paul & Janet Miller, Melba Mirror Image Dance Misoff, Michael & Carol Mix Design Moore-Build Const. & Rest. Inc. Moore, Andrea L. Moore, Brian C. Moore, Jerry Moore, Johnny Moore, Melba J. Moore, Ryan

Moore, Sr., George P. Moore-Purdue, Etwaun Morse, Debra Munster Jr. Womans Club Munster Junior Womans Club Murray, Gavin & Jennifer Murray, Dennis & Cindy Myers, Patricia Myers, Rodney & Brenda Nall, Jeffrey & Amanda Naul, Wesley & Ashley Nawalany, Silvana Nazareth Hall, Ohio Neal, Martha W. Nesbit, John & Lucy Newell, Adam & Zana Niksich, Thomas & Jennifer Nilles, P. Nolan, Greg Nolan, Lambert & Betty Jean Nolan, Sean North LA Veterinary Center, Inc. Northwest LA Plant Food, Inc. Novak, Terry & Joan Oasis Printing OConnell, Dennis & Kimberly Ohio State Eagles - Rossford Eagles #2322 Orear, Susan Organ, Artur & Margaret Osborne, Bryan Oswald, Gretchen Outback steakhouse Owens, Chris & Melissa Owens, Frederick Paragon Patterson, Janet Pauls Farm & Garden Supply Payne, B.D. & Jean Peek, Tiffany N. Perkins, Brent Piazza, Benny or Rene Planet Beach Pluth, Daniel & Saraya Pochron, Timothy & Sheila Portage 16 Portage YMCA Premier Studios Price, Tony Price, Veronica Castaneda

Quinilty, Dr. Robert & Judy Rachau Family Railcats Randolph, William & Betty Rausch, Joseph Rausch, Siobhan Reine, Scott Reiter, Sean & Susan Residents INN in Oakbrook, Ind. Revenew International Rigg, Timothy & Angela River Bend Marina LLC Riverside Roofing Materials, Inc. Robco Oilfield Services Robert Adley for Senate Rohli, Daniel & Danielle Ross, Patricia J. Rothschild, Walter & Dorothy Roycraft, Mark Runge, Patcie Salitore, Michael & Kathryn Salitore, Robert & Judith Sammon, Jason & Brenda Sams Club Sankovitz, James & Margaret Santangelo, Rheta Santure, LTC Michael C. Saucier, Brock & Kimberly Scentsy - Nicole Willford Schammert, Melissa Schmidt, E. Doris Scholl, Robert & Angela Schulze, Mr. & Mrs. Travis Searing, Ken & Mary Segal, Tali Seles, Nathan & Tamara Self, Allen & Bonnie Serio, John Shaffer, Laura Shed Aquarium Shelton, Frank & Mary Shlaustas, Cynthia Silva, Lou Silva, Mark & Allison Simaga, Adam & Natalie Simon, Daniel & Alison

Skidoff, Philip & Sharen Slayton, Pamela Smith, D. & B. Smith, Judy J. Smith, Sharon S. Soelzer, Joshua Solon, Victoria Somerville, Ronald & Sandra South Beach Tanz & Gifts South Gateway Tire Co., Inc. Spearman, Robert & Agnes Speer, Joey & Gayle St. Pierre, Scott & Kendra Star Plaza Step Ahead Physician Weight Loss Stevens, Tedd & Deanna Subway Swiatek, Donald & Amanda Szymaszek, Claudia Talamo, Ty Tastefully Simple Consultant - Jan Luken Tauber, Tim & Judith Taylor, Mrs. Tommy Tedesco, Erin M. Texas Roadhouse of Bossier City TGI Fridays Thompson, Jason & Michele Thompson, Jeff R. Thompson, W. Howard Thorgren, John & Beverly Thriffley, Peter Tiberi, Robert Timms, Michael & Jane Todds Yogurt Tomaga, Peter & Sandra Toporski, Cassandra S. Topps Trailer Sales & Service, Inc. Toth Automotive Ullrich, Howard & Kathlene Ultra Unilver United States Foundation, Inc. United Way Minneapolis, MN Utz, Beth & Derik Valparaiso Country Club Vanis Vennergrund, James & Nancy

Vestal, Judith C. Vincent & Victoria Magryta Vining, Robert & Linda Vitali, Vincent Vizirakis, Debbie Waddell, Randy & Martha Wagners Waid, Sheila Waldron, Dennis and Pamela Waldron, James Walgreens Walker, Claud B. Wallin, Marcelline Weaver, Catherine & Horace Weaver, Donald Weaver, Jimmy & Brenda Weber, Eden Wellman, Gregory & Tonya Whelply, Ronald & Kiersten Whitman, Michael & Julianne Wilkerson, Mr. & Mrs. Ernest E. Williams, Brandon & Daisy Williams, Glenda Williams, Sharonda Williamson, Joseph & Elouise Wilson, Billy & Janet Wineski, Louis & Kathryn Winokur, Emanuel & Joan Winokur, Steven & Harriet Wirth, Donald & Joan Wise, Andy & Lydia Wiseway Withrow, Daniel & Mary Womack, David Wood, Jana S. Woodard, John & Midge Wright, Vickie Wright, Wayne & Brenda Zemburski, Jeffrey Zeta Psi Chapter Ziemniak, Paul & Georgann Zimmerman, Cindi Nirenberg Zimmerman, William & Cheryl Poss Zimmermann, Eric & Kelly Zimmermann, William & Dorothy Zorn, Timothy & Janis

The LDSF has worked hard to prepare a complete list of 2011 donors. Despite our best efforts to avoid errors and omissions, these can occur. If you contributed as a donor and your name was inadvertently omitted, listed in the wrong place or misspelled, please accept our sincere apologies and contact us at megan.rhee@loeysdietz.org, and advise us of the mistake so that we may correct our records. Thank you.

ourfinancials
december 31, 2011

STATEMENT OF FINANCIAL POSITION income expenses NET INCOME TOTAL NET ASSETS $103,200.83 $47,523.98 $55,676.85 $147,592.43

ourfuture
Every day individuals impacted by LDS take heart and make their way through another surgery, another doctors appointment, another personal success. You can take heart in knowing that donations provide these individuals with the support and resources they need to take heart for another day. We hope youll help encourage education, foster research and provide support for those impacted by LDS in 2012. Donate online (www.loeysdietz.org/donation) or by mail (P.O. Box 22468, Baltimore, MD 21203) and help the LDS community take heart. We thank you, from the bottom of our hearts, for your continued support.

revenue

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p. o . b ox 2 2 4 6 8 ba ltimor e, md 21203