Hemophilia of Georgia Annual Report

If your actions inspire others to dream more,

learn more, do more and become more,

you are a leader.John Quincy Adams

2013-2014 Annual Report

30 Years of LeadershipThis past September, I celebrated my 30th anniversary at Hemophilia of Georgia and at the same time announced that I would retire in 2015. I look back upon the past 30 years and stand in awe at what we have all accomplished together: staff, clients, volunteers, Board members and Hemophilia Treatment Center staff.

When I began working at HoG, we had clotting factor products for treatment and a nurse to

help clients learn to use the products. You asked that HoG provide more than medicine and

together we built a model of care and treatment for hemophilia in Georgia that is nationally and

internationally recognized for its excellence. It was your desire to fund research, including gene

therapy and physician-researchers, to improve future care and treatment across the U.S. It was

you who embraced the world via HoG’s pharmacy shipments of donated clotting factor products

to developing countries. It was you who saw the value in client dinners, Camp Wannaklot, family

camps and retreats. It was you who joined in our fundraising efforts, helping others in Georgia

learn more about bleeding disorders. HoG is truly an organization that you designed through

your vision and purpose.

I have so thoroughly enjoyed these past thirty years because I had the opportunity to not only

love my work but admire and appreciate the people I worked with and for throughout the years.

You have great vision, commitment and strength which I have no doubt will never leave this

organization but be an integral part of HoG long after I am gone. Thank you all for allowing me

to help you get where you wanted to go. It was truly a pleasure.

Patricia A. Dominic, Chief Executive Officer

“I have so thoroughly

enjoyed these

past thirty years

because I had the

opportunity to

not only love my

work but admire

and appreciate the

people I worked with

and for throughout

the years.”

A message from Trish Dominic, CEO

Research Leaders

Leading the Way for a Cure

Hemophilia of Georgia contributed

$1,821,533 to research from

July 1, 2013 through June 30, 2014.

This funding supported gene

therapy to cure hemophilia at St.

Jude Children’s Research Hospital

and Emory University; four physician-

researchers through development

grants; two Judith Graham Pool

fellows; and research grants at

Emory Midtown, Emory/CHOA and

Georgia Regents University.

Gene Therapy at St. Jude Children’s Research HospitalIn 2012, Hemophilia of Georgia committed $3,172,401, paid over three years, to fund gene therapy clinical trials to cure hemophilia at St. Jude Children’s Research Hospital in Memphis, Tennessee. Led by St. Jude hematologists Dr. Arthur Nienhuis and Dr. Ulrike Reiss, the St. Jude team continues to improve their treatment of Factor IX deficiency. During this fiscal year, St. Jude’s gene therapy increased the number of patients treated to 10. Four of the patients have discontinued prophylaxis and remain free of spontaneous hemorrhage, while resuming vigorous physical exercise. Three other participants have increased the length of time between their infusions of factor.

Hemophilia Clinical Scientist Development GrantsSince 2003, Hemophilia of Georgia has funded physician researchers to conduct translational research on bleeding disorders and their complications. Each grant is for $75,000 a year, renewable for up to five years, with an additional $7,500 per year for indirect costs. The grant requires an 80% time commitment to bleeding disorder-related research. Through this program, Hemophilia of Georgia hopes to help create the next generation of hemostasis researchers. This funding will allow a physician who has completed research training to advance to the status of an independent investigator. Our goal is for the achievements of these scientists to improve the lives of people with bleeding disorders.

Gene Therapy at Emory UniversityThe Emory gene therapy research is focused on curing hemophilia A (factor VIII deficiency). It is led by Dr. Trent Spencer, Assistant Professor of Pediatrics and Director of the Gene Therapy Laboratory in the Aflac Center, and Dr. Chris Doering, Assistant Professor of Pediatrics (not pictured). Their research proposes using a lentivirus to deliver an engineered factor VIII gene into the bone marrow of patients. The target cells to receive the factor VIII gene are hematopoietic stem cells in the bone marrow. Because these cells can reproduce, they can theoretically continue making factor VIII throughout a person’s life. In order to get the gene into

the stem cells, the researchers must first remove the cells from the body and expose them to the lentivirus. Once the virus has put the gene into the stem cells, the stem cells are infused back into the patient. This process involves low-doses of drugs, so it is more complex than the factor IX clinical trials. The researchers believe the more elaborate process is worth it to achieve a long-lasting cure. The Emory team is working to finish all of the pre-clinical studies required before testing begins in humans.

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Judith Graham Pool Postdoctoral Research FellowshipsThe Judith Graham Pool (JGP) Postdoctoral Research Fellowship program has been administered by the National Hemophilia Foundation since 1972. JGP fellows spend at least 90% of their time on research, which can focus on hemophilia, von Willebrand Disease or other topics pertaining to bleeding disorders. Hemophilia of Georgia fully funds two JGP Fellowships. They are named in honor of Bob & Margaret Carton, longtime board members and supporters of HoG and Rueleen Kapsch, an HoG nurse who retired in December 2013 after working 23 years in the bleeding disorders community.

The NHF/Bob & Margaret Carton JGP Fellowship Sudharsan Parthasarathy, Ph.D., Children’s Hospital of Philadelphia (Molecular Basis of Procofactor to Cofactor Activation in FVIII)

The NHF/Rueleen Kapsch JGP Fellowship Hongxia Fu, Ph.D., Boston Children’s Hospital (Mechanoregulation of von Willebrand Factor Inhibition and Activation)

HoG funded four physician researchers through the Hemophilia Clinical Scientist Development Grant Program during this fiscal year:

Trinh Nguyen, D.O.University of Texas Health Science Center in Houston (Factor VIII Dosing Based on Ideal Body Weight Among Overweight and Obese Persons with Severe Hemophilia A: A Pilot Study) Jordan Shavit, M.D., Ph.D.University of Michigan (Novel Methods for the Identification of Genetic and Chemical Modifiers of Hemophilia) Robert F. Sidonio, Jr., M.D., M.Sc.Emory University (Prospective Feasibility Study of the Bleeding Genotype and Phenotype in Hemophilia A Carriers) Sean R. Stowell, M.D., Ph.D.Emory University (Characterization of Factors Influencing the Development of Factor VIII Inhibitors)

Pete Lollar, M.D., Emory UniversityDr. Pete Lollar is the Director of Hemostasis Research in the Aflac Cancer and Blood Disorders Center, a Professor of Pediatrics, and occupies the Hemophilia of Georgia Chair in Hemostasis at Emory. He has directed a research team for over 25 years with the goals of obtaining a better understanding of basic mechanisms of bleeding and clotting and improving treatment for patients with hemophilia. His group developed a porcine factor VIII product that is effective in patients who have inhibitory antibodies to factor. On October 24, 2014, the Food and Drug Administration approved this product, called Obizur, for the treatment for acquired hemophilia A.

Funding for Research in Atlanta and Augusta In addition to these programs, HoG gave $361,193 in this fiscal year to Emory University/Children’s Healthcare of Atlanta, Emory Midtown, and Georgia Regents University to help maintain an active research community on bleeding disorders in Georgia.

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Leading the Way for a Cure

Hemophilia of Georgia was founded in 1973. Trish Dominic became Executive

Director in 1984 and under her leadership Hemophilia of Georgia has grown to

become one of the leading hemophilia organizations in the world. She was able

to create a vision of what hemophilia treatment could and should be. Trish is

admired for her passion, dedication, energy and determination to improve care

and treatment for members of the bleeding disorders community.

Trish Dominic: Passion, Dedication, Energy and Determination

Trish Dominic entered the bleeding disorders community in 1976 when she answered a newspaper ad. The Delaware Valley Chapter of the National Hemophilia Foundation (NHF) was seeking a Field Representative. A Field Representative worked from September to May organizing fundraising events with hemophilia families and volunteers in each county. Trish started a fashion show and an Oktoberfest event. Since it was the 1970s, “a-thon” fundraisers were very popular and Trish was charged with establishing every type of “a-thon” she could dream up. She convinced schools and colleges to hold volleyball-a-thons and basketball-a-thons. She also spoke to local civic organizations, such as the Lions Club and Rotary, about hemophilia.

Due to the success of her efforts, Trish became the chapter’s Director of Volunteers in 1977. She was now working year-round with all the counties surrounding Philadelphia and southern New Jersey. Her hard work, dedication and commitment to the Delaware Valley Chapter led to her becoming its Executive Director just three years later. Not only was she leading the chapter, but she still had all of the responsibilities of her former position! One of her accomplishments was taking the chapter’s fundraising to a higher level by hosting a testimonial dinner honoring a local official such as a bank or hospital president, that raised almost $200,000. Trish greatly valued the knowledge and experience she gained working with volunteers and the board of directors.

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On September 20, 2014, Trish Dominic, Hemophilia of Georgia’s CEO, received the Lifetime Achievement Award from the National Hemophilia Foundation (NHF) at its Annual Meeting in Washington, D.C. This award recognizes an individual who has dedicated his or her life to improving the lives of those affected by bleeding disorders. The award coincided with Trish’s 30th employment anniversary at HoG and the announcement of her plan to retire in the spring of 2015. “After a wonderful 30-year career at HoG, I am looking forward to a new life. I leave knowing that Hemophilia of Georgia is in good hands and that the path we have forged will continue to help improve lives.”

Celebrating 30 Years of Leadership

LI

FE

TI

ME

A

CH

IE

VE

ME

NT

A

WA

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Trish’s vision has not been limited

to just the state or the region. In 1996, the World Federation of Hemophilia (WFH) began “Operation Access” in Chile, a program designed to make factor concentrate available where it was previously unattainable. The WFH asked Hemophilia of Georgia to work with

the Chilean hemophilia organization to educate its members and to help them advocate before the Chilean government. This relationship was formalized into a twinning partnership. Since then, Hemophilia of Georgia has twinned with Honduras and is now in its third year of twinning with Bolivia. In 2007, the WFH named the Honduran Hemophilia Society and Hemophilia of Georgia its “Hemophilia Organization Twins of the Year.” When Trish learned how much the WFH was paying to ship donated factor concentrate around the world, she used Hemophilia of Georgia’s influence to negotiate a much lower rate. She then offered the services of HoG’s pharmacy to store and distribute the factor – free of charge. In 2010, the WFH presented HoG with the International Outstanding Service Award for being “constant and outstanding” in overcoming the obstacles of shipping factor to those who need it the most. In 2013 alone, Hemophilia of Georgia voluntarily shipped 18 million units of factor to 43 countries. Trish has served on the Board of Directors of the WFH USA since 2006. In 2012, she joined the WFH’s Fund & Resource Development Committee and became a Close the Gap Campaign Regional Co-Chair.

According to HoG client Bob H.,

“With HoG in existence, somebody is there when you say, ‘Help!’ Someone is there to reach back when you reach out for help.”

He added that he can remember the day when HoG CEO Trish Dominic was hired.

“To me, the engine was started by this core group but it wasn’t going down the tracks too far until Trish got the steam going and helped to make it what it is today. She needs to be recognized for what she has done. Trish has made this her heart and soul.”

In 1983, Trish’s husband was transferred to Atlanta and she briefly left the bleeding disorders community. Even though she quickly found a corporate job, she still wanted to work to improve the lives of those with hemophilia. She met with the leaders of the Georgia Chapter of the NHF to offer her advice and guidance. She realized that hemophilia care in Georgia was far behind what she had experienced in Philadelphia. Trish was able to create a vision for the Georgia volunteers of what hemophilia treatment could and should be. She had the support of Karen Meredith, a consultant to Hemophilia of Georgia, who had been a nurse at an HTC in Wisconsin. The reluctance of the Georgia legislature to give funding to the local chapter of a nonprofit based in New York City led to the creation of two hemophilia organizations – the Georgia Chapter of the NHF and Hemophilia of Georgia – which shared a building, volunteers, and just about everything else. The Georgia Chapter board of directors knew they had found a jewel and hired Trish as their Executive

Director in 1984. Looking back, Trish says she originally only planned to stay a couple of years, just until hemophilia treatment centers were established for the state, but “there was always more to do and some new challenge that inspired me to stay.” She adds, “I love the opportunity to make something new happen!”

Under her leadership, many new things did happen. The Georgia Chapter eventually merged with Hemophilia of Georgia and the organization expanded over time to a staff of 42. Hemophilia of Georgia’s team of outreach nurses and social workers became a model system of care. The nonprofit pharmacy developed into a sophisticated operation. Georgia created its own camp program, Camp Wannaklot, which grew from 28 campers to 150. The agency became the Regional Core Center, working to strengthen hemophilia care throughout the southeast. Hemophilia of Georgia endowed three chairs at Emory University – a Research Chair in Hemostasis in 2004, a Director’s Chair in Hemostasis in 2006, and the Sidney F. Stein, MD, Chair in Hemophilia and Hemostasis in 2013 – to attract leading hematologists to Georgia’s pediatric and adult treatment programs. In addition, HoG endowed a Professorship in Hemostasis at Emory in 2004.

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The Lifetime Achievement Award was not Trish’s first award from the NHF. In 1991, she received the NHF Outstanding Staff Recognition Award. The qualities that earned her that award were recognized by HoG’s staff when they honored her at a 30th anniversary luncheon on September 12, 2014. Staff members spoke of Trish’s perseverance, integrity, and vision in making HoG what it is today. Praise came from throughout the bleeding disorders community. Fran Haynes, Executive Director of the Hemophilia Foundation of Greater Florida, wrote, “She has led by being among the finest examples of a true professional in the nonprofit arena. She has served as an extraordinary role model to colleagues as well as the HoG staff. . . . There are many experienced Executive Directors and Chief Executive Officers in the bleeding disorders community like me who have had our careers supported by Trish. She is a wise counselor, a standard bearer of integrity and civility, and is as highly respected as anyone in this field.”

In order for hemophilia pharmacies to work cooperatively and

have a greater voice, Trish helped establish the Hemophilia Alliance. Trish served on its board from 2001 to 2009, including a term as President from 2001 to 2005. In 2004, the Hemophilia Alliance established a group purchasing organization, a vision that Trish pursued for many years with the Alliance membership. Trish served on the board of the Group Purchasing Organization from 2004 to 2009. The purpose of the group purchasing organization was to decrease the cost of factor concentrate and to establish administrative fees that could fund staff and programs at NHF chapters, treatment centers and MCHB/CDC regions. In 2014, the Alliance Foundation gave $900,000 to chapters, treatment centers and regions in the U.S., for a total of $3.3 million in awards since 2009.

In 2002, after talking with Dr. Bruce Evatt at the CDC, Trish became increasingly concerned that the future of specialized care at HTCs was in jeopardy because sufficient numbers of new hematologists were not specializing in hemostasis. In response, HoG began offering Hemophilia Clinical Scientist Development Grants, designed to give new physician researchers up to five years of funding to

“I am thinking of the exciting days that lie ahead and celebrating a new year at HoG, a year that will bring new leadership to an organization that has never strayed from its mission and because of you, has had outstanding vision. Thank you for your friendship and your support. We have come a long way together.” Trish Dominic

progress to the level of an independent investigator. To date, the agency has funded 11 physicians, many of whom have gone on to assume leadership positions at an HTC. Hemophilia of Georgia has been a longtime funder of the NHF Judith Graham Pool Postdoctoral Research Fellowships and Trish has repeatedly challenged other NHF chapters to support this program. As gene therapy research began to offer real hope for a cure for hemophilia, Trish again called for Hemophilia of Georgia to take the lead. In 2012, the agency committed nearly $6 million to fund gene therapy clinical trials.

One of the hindrances to bleeding disorder research has been the absence of a secure national database of patient information. In

2006, Trish was one of the driving forces behind the creation of the American Thrombosis and Hemostasis Network (ATHN), a nonprofit organization to create and provide stewardship for such a database. Trish has served on the ATHN Board of Directors since its founding and is presently the organization’s treasurer.

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Year in Review • July 1, 2013 – June 30, 2014

Camp WannaklotCamp Wannaklot was held July 28 through August 2, 2013 at

Camp Twin Lakes in Rutledge, GA. During camp 2013 we celebrated 20 years of camp with 105 volunteers and staff serving 129 campers who have hemophilia or other inherited bleeding disorders. During this fun-filled week, campers made new friends, learned about their bleeding disorders and shared new experiences.

The John Youtsey Memorial ScholarshipThe John Youtsey Memorial Scholarship was awarded to 36 Georgia residents affected by hemophilia or other bleeding disorders for the 2013-2014 academic year. Since its inception, this program has awarded more than 390 scholarships totaling over $975,000 to help deserving students achieve their academic goals.

Family CampFamily Camp was held in September 2013 and March 2014. Sixty-five families enjoyed getting to know one another, sharing stories and spending time with HoG staff and volunteers. They participated in educational sessions and fun camp activities and exchanged ideas about raising a child with bleeding disorders.

Teen RetreatTeen Retreat was held over Martin Luther King Jr. Day weekend in January 2014 at Camp Twin Lakes Will-A-Way. Nineteen teens participated in educational sessions to

identify possible career choices and learn about scholarship opportunities. The teens also visited local historic sites and attractions in downtown Atlanta. They completed a service project in honor of the National Day of Service.

Trot to Clot Walk and RunsThe Trot to Clot Walk and Runs are fun, family-centered events that raise money to fund Camp Wannaklot, the only camp in Georgia dedicated to children who have hemophilia or other inherited bleeding disorders. Trot to Clot Walk and Runs were held in four locations in fiscal year 2014: Augusta, Columbus, Stone Mountain and Lawrenceville. A total of 476 enthusiastic participants and 83 dedicated volunteers helped raise more than $63,000 for Camp Wannaklot.

Care and Treatment Leader

Hit ‘Em for HemophiliaThe 31st Annual Hit ‘Em for Hemophilia golf tournament was held October 29, 2013. One hundred seventy-six golfers enjoyed the beautiful fall weather. During the reception, master of ceremonies and longtime supporter, Atlanta Braves broadcaster Joe Simpson, received the Ernie Johnson Award to honor his long-standing support and commitment to the tournament. $201,306 was raised for research for a cure. Forty-four volunteers served on the golf tournament committee and worked tirelessly that day to help make this event a great success.

Social Services and SupportHoG’s four Social Workers helped enroll 66 clients with no insurance into the insurance exchange for a savings to the state of over $1,000,000. Social Workers also provided counseling and community resource referrals, and assisted clients with personal and financial issues. Eight hundred eighty-four HoG clients were educated on consumer issues that targeted financial aspects of their medical care and included education on insurance and billing. Two hundred twenty-seven young adults received counseling on managing their bleeding disorder and transitioning to adult care.

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Humanitarian EffortsDeniece Chevannes, Health Educator and Millie Rondon, Office Manager traveled to Bolivia in October 2013 to provide hands-on training

to HoG’s twinning partner, Fundación Nacional de Hemofilia Bolivia (FUNAHEB). The twinning program is part of our work through the World Federation of Hemophilia (WFH) to help countries with few resources and limited access to care and treatment for bleeding disorders. Our pharmacy shipped 4.5 million units of donated clotting factor to 34 countries on behalf of the WFH.

AdvocacyHemophilia Day at the State Capitol was held January 27, 2014. Five clients and 10 staff members were recognized by Representative Matt Dollar and Representative Harry Geisinger, who presented a formal resolution in the House of Representatives declaring it “Hemophilia of Georgia Day.” In March, seven clients and three staff members traveled to Washington, DC to participate in Washington Days, hosted by the National Hemophilia Foundation. They met with elected officials to gain support for HB 460, the Patients’ Access to Treatment Act.

PharmacyHoG served as a contract pharmacy for three Hemophilia Treatment Centers in Florida and used the revenue to support the Greater Florida Chapter of the National Hemophilia Foundation. We worked together with the chapter to convince legislators to allow Medicaid reimbursement for the Florida 340B programs.

Care and TreatmentSeven HoG Outreach Nurses offered support and education to 1,111

clients through clinics, client events, home visits and phone calls. Nurses visited clients in their homes and provided infusion training and follow-up to 358 clients. They also gave presentations on bleeding disorders to 94 schools, eight pre-K classes and five day care centers, reaching 1,315 teachers or caregivers.

Client DinnersTwenty-four client dinners were held throughout the state with 1,018 participants. Clients and their families came together to share experiences, get answers to questions about living with a bleeding disorder and meet others nearby who face the same challenges.

HoG OnlineMore people connected with HoG online this year than ever before. There were 253,647 unique website visits. The Hemophilia, von Willebrand Disease & Platelets Disorder Handbook was one of the most frequently searched sections of the HoG website with 167,455 visits. HoG’s e-newsletter, Horizons in Hemophilia, had 1,069 subscribers. There were a total of 416 social media posts. On Facebook, 1,169 fans liked us and 299 people followed us on Twitter.

96% of all Hemophilia of Georgia’s total expenses goes towards programs and services.

RevenuePharmacy 97%Grants 2% Fundraising 1% 100%

ExpensesProgram Services 96%Supporting Services 4% 100%

Fiscal Year 2014

nProgram Services

nSupporting Services

nPharmacy

nGrants

nFundraising

Revenue Expenses

Care and Treatment Leader

Three New Leaders on Board

Amy GreeneAmy is the Vice President of Brown & Company Jewelers in Roswell. She majored in Spanish Studies at the University of Georgia, is a Graduate Gemologist, and earned her Masters of Business Administration from UGA. Amy is not only a busy business woman, but also the mother of a toddler with hemophilia. Her brother has severe hemophilia A. “HoG has been a part of my family’s life for years and when I found out that my son was going to have severe hemophilia, my first phone call was to HoG. I became a part of the service side to HoG and the more involved I’ve become the more impressed I am with the organization itself and also the community that they help. Joining the board was an honor that I couldn’t turn down.” According to Amy, her most recent accomplishment was conquering home infusion.

Neca SmithNeca Smith is a former employee of Hemophilia of Georgia, having worked at HoG from September 1999 through March 2003. She went on to further her education, obtaining a Professional Counselor License and Certification for General Mediation, in addition to becoming a Certified Anger Management Specialist and Certified Professional in Managing Workplace Conflict. She’s also published several books and written articles on these topics. In 2005, Neca established her own consulting firm, AidevO People Consulting, LLC. She is a member of the National Association of Women Owned Businesses, American Society of Training & Development (Atlanta Chapter) and the Society of Human Resources Management (Atlanta Chapter).

Tom SinghTom is a graduate of the University of Florida, where he earned a Bachelor’s degree in Business with a minor in Health Science. He has worked at Merrill Lynch for 14 years and is currently the Director of their Duluth office. He also runs an eight-person Wealth Management Group, Rogan, Singh & Associates, that handles the financial affairs for a small group of families around the country. Tom and his wife, Jessica, live in Dunwoody with their two children; ages 6 and 2. He is passionate about helping our nation’s troops and has raised money for Military Outreach Programs which help veterans returning from battle attain college degrees.

Three new members joined the Hemophilia of Georgia Board of Directors this year: Amy Greene, Neca Smith and Tom Singh.

HoG Board of Directors

Chief Governance Officer

Nick Blackmon

Vice Chief Governance Officer

Dan Maddock

Secretary

Arthur Herman

Directors

Hiram (Hikie) Allen, IVJanet GlassAmy GreeneJohn MitchellTom Singh Neca Smith

Emeritus Director

Bob Carton

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Serving on HoG’s Board of Directors is a volunteer position and requires a clearly defined level of commitment. Board Members are required to attend four meetings annually and a two-day board retreat. Among the subjects discussed at these meetings are client care and treatment, client satisfaction with programs and services, review and approval of the agency’s budget, and a discussion and review of the agency’s audit report.

Hemophilia of Georgia Board Leaders

The idea for the Junior Board of Directors at Hemophilia of Georgia arose in a strategic planning meeting just two years ago. Today, its seven members are working hard to raise awareness of the disorder and support HoG’s work by planning fundraisers, volunteering at events, and garnering support for HoG in their communities.

Made up of HoG volunteers, those affected by a bleeding disorder, and former participants in HoG’s Leaders in Training program, the Junior Board meets regularly and embarks on an annual retreat to plan their support activities. To gain a deeper understanding of HoG’s inner workings and full impact, they also joined in on the (senior) board’s annual Governance Board Training Retreat. “These seven young people have supported HoG with 2,500 volunteer hours, implementing three fundraising campaigns, recruiting and working as counselors for our camps, and shining a bright light on our mission,” said Deniece Chevannes, HoG’s Health Educator. “The results they’ve produced have been amazing.”

Leaders in Training Leaders In Training (LIT) are youth ages 15-17 who work with HoG mentors to develop leadership skills through service learning projects. Our motto is “Serve. Learn. Lead.” Our purpose is to develop youth leaders with a strong sense of perseverance in the face of challenges, foster a sense of possibility, and develop the determination to assume responsibility to continuously learn and improve. Our program centers on an incremental leadership/responsibility model that allows youth to continually learn and develop skills that will lead them to the next level of partnership with Hemophilia of Georgia.

We strive to develop youth who will lead through service, and are dedicated to improving the lives of not only those affected by a bleeding disorder, but the community at large. We nurture youth who have strong vision and who work hard toward making their dreams come true. Youth involved in the LIT program will develop the necessary skills to become active role models.

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Future Leaders

Junior BoardPictured, from left to right: Martez Favis, Almina Kovac, Ashley Swan, Tyler Guffey, Brittany Nalley, Daniel Cribb, Sidd Dalal

Individual Donors 2013-2014Bill and Cindy AcreeKim AdamsBigyan AdhikariDavid and Shalyn AhmadiColleen AkersHiram Allen, III and Elizabeth AllenLeonard and Becky AllenMildred AndersonJannelle AndrewsAna AntunTara ApplingAlexis AtwoodApril BakerDiane BakerKaren BakerJason and Rochel BanksRita BanksMichael and Joyce BankstonJ Leeds BarrollThomas Bat, MDGlaivy BatsuliJoy BellCarolyn BennettDavid and Sharon BenningtonRoger BlackstockTracey BoothScott BouchetteCorey and Tiffany BoydKaren BrannonAmy BrethertonKatie BrewerMichael BrieleHelen BrinkmanBrandon BrookRuth BrownLaurie BrunsonPam and Staley BryantSteve and Kelly BucknerDavid Burghardt and Elizabeth PendergastJessica BurkeRobert BurtonWilliam ButlerChuck and Mindy Byram

Rob ByramJames and Julie CaesarAndy and Molly CamarataAndrew and Leslie CameronSteve CampTerry and Janice CampbellDiane CannonWayne and Karen CarlbergLeigh CarpenterVicky CarrollMelissa CarterKelly CashFerrin ChesteenDeniece ChevannesSusan ChiltonJoan ChumbleyLynn ClappJason ClarkKaren ClarkMartin ClarkAndrea Clement SantiagoChris ClicknerFreda ColeJohn ColeAlicia ColemanVieka CookJohn and Eva CooperShelby CopelandChristopher and Anna CoppockJeff Cornett and Edward Fernandez-VilaKrista CosgroveFrank CostelloCourtney CoxKen CrandallRena CrewsJeff and Betsy CumminsEric CurtisDon and Robin CustardWilliam and Sarah DaughertyDebbie and Alan DavisRodney DavisShelly DavisAlan DeAngelo

Anthony DeBalsiBrandon and Ansley DenihanBarry DicksonPierre DixChris and Sharon DoeringTrish DominicFreda DosterFrancine DowdyKyandra DowdyKirstin Downie and Joe MonfortBevan DoyleKaren DrozeVaishali DubeyLora DugganPat DumbletonTim and Michelle DuttonAngela EastJoseph EctorZaire EllisonLauren EssexLisa EubanksWilliam and Phyllis FarthingKari FazioRussell and Melanie FazioTimothy FazioDebbie FergusonKathleen FincherPam FincherYvonne Ann FincherValerie FisherMichelle FitzwaterJulia FountainMichelle FournierLoretta FowlerAlvin and Milele FrancisJill FranklinNell FranklinDoris FriesJamie and Tonya FullerRobert and Beverly GailitisBrandie GatesAshley GaylorKaren Geney and Cathy Woolard

Giving Back and Taking the Lead

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Why I Donate“A few years ago we didn’t know anything about HoG. Our only real exposure to hemophilia and its impact was through my brother’s father-in-law, who has the disorder. When my nephew, Mason, was born, they knew there was a 50% chance that he would inherit it and so he was immediately tested after birth. It wasn’t long after receiving a positive diagnosis that they were contacted by someone from HoG and over the past several years we have been nothing but impressed with the level of support that my brother’s family receives through your organization. It often feels like there is little we can offer to directly help with the unique struggles that come with this disorder, so we feel one of the best ways we can help is by supporting the organization that is equipped to give them the support they need and always does so in a way that consistently impresses.”

Jamie and Julie Caesar

Lisa GentryMark and Jennifer GolderLily GomezSally GreathouseMike and Amy GreeneMaria GuerraChristopher and Claire HallDavid HallMarie HallMichael HallRyan HallTanya HamlerTracye HamlerWillie HamlerDonald HammondLonna and Ron HandleyTimothy HandleyLindsay Harder GillKim HardinBennie and Carol HargroveHolly HarperTammy HarringtonJennifer HarrisSandra HarrisonWanda HarrisonParker HarveyKeiko HaunAimee HaydenJack and Gail HealeyErnest and Diane HeinrichAnne HelmsKaitlyn HendrixMiranda HermesLynn HickieDenise and James HicksJames HicksMartha HicksPamela HillJacob HollisPatricia HollowayVictoria HornerCathy HulbertChristi HumphreyBenjamin HunterAudra Hurst

Kerry InksLena JacksonMarquise JacksonJeffrey and Sherri JacobsHeather JacquesBertha JamesMike and Alma JewellNestina JoharSelena JohnsonLawanna JonesToya JonesLisa KaplanRueleen KapschChristine KemptonFinian and Chrissy KennedyMary Ann KennedyJenna KirschenmanConnie KnorrPenny KumpfLauren LacerTina LandrySandra LaneCarol and Holly LaskyRobert LatimerJonathon LawrieChassy LeeNina LewisRenhao LiJenny LindsayAshley LoudermilkRoselyn LovelaceTaylor LundeTeresa LundeAstra LyonsDan MaddockMary MakaBecky MakiBrian MaloneyMaria ManahanEric MandusMatthew ManessJim and Lisa MartinMichelle MartinRodney and Pamela MartinFrank Marzullo

Jeff MayErin McBrideVic and Shanie McCartyMatthew McClishLori McCullersSimone McFarlaneSean McIlroyMelody McInnisChristopher McKinneyJohn and Betty McMenaminLinda MeadowsShannon MeeksKim MercerJeanne and Nathan MillerJudy MillerKristy MillsRobert MiltnerJohn and Elaine MitchellRenee MitchellRozetta MitchellJohn and Watana MobleyThomas MoormanGina MorganJulie MosleyBrian MullisMargaret MunsonCarter NayJane NazarmanCharles and Maggie NeedhamElyse NelsonBrenda NguyenMichael NorthDawn NortonDon NortonDoug and Karen NortonGail NovakGena OchalErin OchsMinerva OlavarrietaBetty PaceKristen PadulaDaniela PalmerSandy PalmerRobin ParkerAnup Paudel

Joseph and Samantha PellaRichard and Rhonda PercivalRick PierceJoe and Amy PinsonBrenda PiotrowskiGreg PittmanMarcia and John PomeroyDaniel PowellTabitha PowellRobert PowersTom and Susan PuettJoe and Karen PuglieseDavid and Ruth PursleyApril PurushothamanRena PutnamChristopher QuesenberrySolis RachelsHana RajnochovaBrenda RappéTeresa RayArlene RazzanoKimberly ReedZachery ReformatBetty and Bill ReichardRosalind RhodenChris RichardsFred RicksJames and Joan Ann RidgleyCharles and Barbara RiggsGlenna RighterGordon RobertsKirk RobertsonMayra RobertsonChristine RobinsonJohn RodriguezApril RolandMillie RondonDebra Jean RossFrauke RussellJustin SanckenCharlotte SandersChatchai SatienpattanakulMichael SchoppenhorstKathy ScollanLorraine Scollan

Moe and Donna ShaferVanessa ShanahanStanton ShapiroJennifer SharpAjene SharpeHannah SharpeOmar SharpeBecky ShealyLeesa ShepherdTiffany SheuJim ShieldsLauren ShusterJames SimonBeverly SimpsonDavid SimsPhillip and Christy SimsLynette SlovenskyDevon and Daydre SmithGary SmithJason and Jessica SmithLaura SmithNathan SmithWilliam and Laura SparrowBettye SpenceTrent SpencerGwen and James SpurlinCasey StarrSidney SteinJames and Shari SteinbergWes StinsonJo Ann StoddardAndrew and Patricia StoneJudy SullivanKarl and Ingrid SvendsenRick and Kathy SwygmanSana SyedSaroj TamangBrittany TatumDonna and James TatumTonya TharpeTom and Judy ThibadeauSonya ThomasTyhepha ThomasJacqueline ThorneKelly Tickle

Charlene TierneyLeah TobinJoy and Brandon TomonyBobby TranDon and Sandy TrottRonald TsaiMargaret TurlingtonSherry TurnerMarcie TwomeyJamie VictorJanna WagnonMaryellen WaitingAngel WallaceCynthia WallerKatherine WalstonAngie WatersLawrence and Carol WeippertHeidi WeitzelEmily and Andrew WelschKen and Carol WelschTimothy and Katherine WelschAmanda WestSteven and Barbara WheelerKelli WhiteMark WhiteAngela WhitehallSusan and Melvin WhitfieldGreg and Barbara WhitlockAngela WilliamsDawn WilliamsJennie WilliamsKim and Nathan WilliamsLorna WilliamsPat and Mariann WilliamsPatricia WilliamsTabitha WilliamsMichelle WilsonSamuel and Jennifer WilsonMonica WineglassBrandon WohlschlegelJoyce WoolcottPaula WoolfTom and Lisa WrightDenise YoungEmily Zimms


www.hog.org 13


Corporate Donors 2013-2014Arthur J. Gallagher & Co.Atlanta Braves FoundationBaxter International, Inc.Bayer HealthCareBB&T WealthBetacomBill Bartholomay FoundationBiogen IdecBretherton ConstructionBrooks Group and Associates, Inc.Brown & Company JewelersCapital Financial GroupCHOA of GwinnettCoca-Cola Refreshments, USACommunity Health CharitiesCSL Behring, LLCDelta Air Lines, Inc.Ericsson, Inc.Fidelity BankGiesecke & Devrient America 3S Inc.Goodman NetworksGreen Oaks DentalGrifols, Inc.Hardy ChevroletHickory Road Baptist Church, Inc.IOI Payroll Services, Inc.Lazer Spot, Inc.

Lima Construction & Remodeling, Inc.MasTec Network SolutionsMerrill LynchMizunoNelson Mullins Riley & ScarboroughNovo Nordisk, Inc.OctapharmaOgilvy & Mather AtlantaOrthopedic & Sports Physical Therapy, Inc.PfizerPublix Super Markets, Inc.State of Georgia, Georgia MeritSunbelt SnacksTalmer Bank and TrustTaurus Development, Inc.TEKsystemsTruistTurner Broadcasting System, Inc.United DistributorsUnited Way of Central & Northeastern ConnecticutWells Fargo BankWilliams Benator & Libby, LLPWR Starkey Mortgage, LLPZWJ Investment Counsel

Anthony AbeytaBen and Adria AcreeClarence and Polly AdamsJeremy AdamsDeborah AlexanderHiram (Hikie) Allen, IVKadi AltmanChristian AnsaldoMark ArmstrongLuba BabjiDerryl BarronNick BarronGlaivy BatsuliJesus BautistaJoyce BeaverCarolyn BennettEareina Black

Nick BlackmonChris BlighKelsey BohmGayle BoutinKaren BrannonChris and Heather BrittonTamara BrownCameron BrunsonCara BryanPam BryantSteve BucknerJoseph BurnetteTierany BurtonMichael ButlerCarol CarothersBob CartonElizabeth Chapman

Robin ChapmanGrant ChristianJulia ChungJustin and Mary Beth ClarkeMaralee ClarkeNick CokerDiane CooleyKathy CotleurKen CrandallValerie CrenshawDaniel CribbMelissa CrillyZach CumminsMary Lou CyganSidd DalalJatorey DanielNajla Demons

Todd DonaldsonSally DosterAmy DunnBenjamin and Janine DworshakJoshua EubanksMartez FavisRussell and Melanie FazioKelsey FervierAlisa FiorentinoCarley FloresDonna FrickKyle GalvinJudy GaunceJohn GhorbatiJanet GlassLily GomezLorenzo Gonzalez

Volunteers 2013-2014


Why I Volunteer“Hemophilia of GA has given so much to my family, with two sons that are clients, that I am ecstatic for the opportunity to give back! There are so many different fun volunteer opportunities to choose from that it’s hard to pick just one. The Hit ’Em for Hemophilia Golf Tournament is one of my favorite events to assist with and it is wonderful to see the Atlanta Braves organization involved with such a great cause. I always enjoy my time giving back at these events. “

Kerri Leland Pictured with pitcher, Kris Medlen

Amy GreeneJayne GrierTyler GuffeyJose GuillenSamantha HammackJessica HamrickJennifer HarrisCharles HearnCheryl HendersonRobert and Joyce HensleyArthur HermanTiffany HickmanLillie HintonJason HunsuckerEmily IveyMickey and Candace IveySandy IveyGlenn JeffersonChristine JenkinsMeghan JenkinsStormy JohnsonWhitney JohnsonIandria JosephAmy KallingalKenneth KassalenPaul and Kris KassalenChrissy KennedyShreeya KhuranaDanielle KillianAmanda KirkmanAlmina KovacBetsy KovalHannah KovalJoan KraskDon KumpfSailaja LakshmananJonathon LawrieJeffrey LeeYoung LeeKerri LelandFelipe LeonBjorn LohseThao LoiNikita Lyons-Murry

Emily MacDonaldDan MaddockMertha MaddoxSam MaddoxBilal ManzoorRebecca MarkovitzAnn MarksMelissa MartinQuenton MatthewsBeth McCrackenCamille McDougaldShirley McMinnRaul MedinaShannon MeeksBill MitchellJohn and Elaine MitchellMatthew MozzoChelsee NabrittBrittany NalleyScarlett NealMadeline NiersbachHarley NoffsingerDawn NortonDoug and Karen NortonGail NovakFredrick OkwaroSpencer OsbournGabriel PachecoKristen PadulaJason PalmerPaul ParkKishen PatelAlex PhamEmily PopeJacob PopeKathy PressleyBrandon QuinonesAvery RandallCody ReedJelissa ReedBill RileyMary RiznerJohn RodriguezEdwin Romero

Ricardo RoqueRyland RumphSteve SampsonKyndall SandersJohn and Laura ScottLeslie ScottShariq ShahbaziAnne ShawAustin ShawElizabeth ShawTom SinghHelen SloatCalvin SmithDaydre SmithDevon SmithNeca SmithYvonne SmithRob SottosantiMallorie StaffordJo Ann StoddardBilly StonecipherAshley SwanEric SzederKitras ThomasCarolina ThompsonYazmin ThompsonJay TinkoffBruce and Elisabeth TownleyBobby TranAnthony ValdezKristine VanijcharoenkarnTessa VealPatti WalsheCourtney WashingtonMegan WeidnerMary Ellen WestJaRon WhitakerChris WillettTammy WilliamsTa’Varis WilsonMonica Grace WolfeBecky WoodcockPaula WoolfBrandon Young



Volunteers are at the heart of Hemophilia of Georgia and help us to fulfill our mission to improve the quality of life for all those affected by hemophilia and related bleeding disorders. We hope you’ll consider joining our team of dedicated volunteers. These photos highlight some of the ways you can make a difference.

8800 Roswell Road, Suite 170 • Atlanta, GA 30350-1844770.518.8272 • www.hog.org

About Hemophilia of Georgia Hemophilia of Georgia is a nonprofit organization dedicated to providing services and support for people who have hemophilia, von Willebrand Disease and other inherited bleeding disorders. The only agency of its kind in the state, Hemophilia of Georgia works to enhance clients’ care and quality of life while actively pursuing a cure through research funding.

Founded in 1973, Hemophilia of Georgia exists so that people affected by bleeding disorders live as normally and productively as possible. Recognized as a model system of care, Hemophilia of Georgia has grown to become one of the leading hemophilia organizations in the world and is a trusted resource for medical providers.

Hemophilia of Georgia is guided by a volunteer Board of Directors that includes individuals who have bleeding disorders. For more than 40 years, the Hemophilia of Georgia staff has provided a wide range of programs and services including blood clotting products, home infusion training, education, and activities for people who have hemophilia and other bleeding disorders. Hemophilia of Georgia’s nonprofit pharmacy provides convenient home delivery of clotting factors and other medications at competitive prices.

For more information, call 770-518-8272 or visit www.hog.org.

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Hemophilia of Georgia Annual Report

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Transcript of Hemophilia of Georgia Annual Report