Seven Honored for Service to Ectodermal Dysplasias Community

August 12, 2016November 18, 2016 Category: News Posted by Mary Fete

We were proud to recognize the following individuals and families for the amazing contributions they have made to families affected by ectodermal dysplasias and the NFED. We honored them at our 35th Anniversary Celebration on July 22nd in St. Louis.

Outstanding Service Award – Timothy J. Fete, M.D., M.P.H.

For 23 years, Dr. Time Fete has been the kind-hearted pediatrician on our Scientific Advisory Council (SAC) who lends a compassionate ear and advises parents on how to best care for their children affected by ectodermal dysplasias. He often says that the families teach him. But it’s he who listens and then takes action to advance understanding of the conditions.

He’s been on research teams that have investigated growth in hypohidrotic ectodermal dysplasia (HED), increased incidences of allergies, cognitive development and a classification system for ectodermal dysplasias. Most recently, he was instrumental in listening to the concerns of families affected by Goltz syndrome and leading efforts for two research conferences dedicated to learning more. Dr. Fete is our media star who graciously shares his expertise to raise awareness. He always says “yes” when we ask him to talk on camera or for reporters. He also serves as vice chair for our SAC, has written and edit numerous educational publications for the Foundation, and educated care providers at numerous symposia.

By day, he is the Children’s Miracle Network Distinguished Professor and Chairman in the Department of Child Health at the University of Missouri Health Care.

Outstanding Service Award – Richard A. Lewis, M.D.

Dr. Richard “Dick” Lewis joined the our SAC in 1994 as our first ophthalmologist. But fortunately for us, his knowledge is not limited to that field. He also brings his expertise in research and genetics to help our Council and families. He’s been instrumental in advancing our research program by helping us establish guidelines and by reviewing research project proposals.

We can always count on Dr. Lewis to read our emails and respond quickly. He’s wonderful about calling families with eye issues to answer their questions or meeting with them at our Family Conferences. He’s an impeccable editor for the many medical publications we publish. The NFED is fortunate to have Dr. Lewis’ dedication to advancing understanding of the ectodermal dysplasias and helping the people it affects.

Dr. Lewis is Professor in the Departments of Molecular and Human Genetics, Ophthalmology, Medicine, and Pediatrics at Baylor College of Medicine in Houston, Texas.

Outstanding Service Award – Ruth and Keith Geismar and Alice and Bruce Geismar

Like many NFED families, Ruth and Keith Geismar were completely surprised when their second son, Ryan, was born in 1998 with ectodermal dysplasia after a healthy pregnancy and no family history of the condition. In Ryan’s case, his arrival was precarious because his skin sloughed off on 70% of his body. This severe skin erosion associated with the type of ectodermal dysplasia Ryan has, ankyloblepharon-ectodermal dysplasia-clefting (AEC) syndrome, would be a serious health issue for his early years of life and all-consuming treatment process for his family.

Ruth and Keith’s extended family supported them as they navigated unchartered territory and sought out a team of doctors to care for Ryan’s numerous medical needs. Their family lent this same support in 2001 when Ruth and Keith decided to host an event that would raise money for ectodermal dysplasia research and treatment for other affected families.

The Halloween Bash was born, drawing 300+ people every year for a cocktail party with a silent auction in New York City. Ryan’s grandparents, Alice and Bruce, co-host the Halloween Bash with Ruth and Keith and have been instrumental in its 15-year success. In 2012, the Geismar decided to make the Bash a virtual event online to save resources. They continue their success, enlisting the support of their devoted family and friends.

The foursome has passionately forged a path to raise more funds than anyone else in NFED history. They have now raised more than $3.9 million.

 

Geismar Family Volunteerism Award – Ashli Matus George and Tom George; Kristin Matus-Kelso and Mark Kelso; and Terri and Jerry Matus

The talented and vivacious Allyson Glenn Kelso arrived in the world on December 24, 2004 and forever changed her extended family’s life. Affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, Ally was born in California to Kristin Matus-Kelso and Mark Kelso. Kristin’s sister, Ashli Matus George, Googled her symptoms, discovered and contacted the NFED and found the answers and resources her sister needed.

Kristin and Mark, spent the next months learning about her condition and preparing for her numerous surgeries to repair her clefting. On the other side of the country in Virginia, Ashli took action to do something to honor her niece and help other families affected by ectodermal dysplasias. She hosted the 1st Rally for Ally that June to honor her niece. She invited her friends and family to a BBQ, complete with a silent auction and raffle, in her backyard ally. Their efforts raised $6,500 for the NFED.

Twelve years later, Rally for Ally has now raised more than $168,000 for the Foundation. It has grown each year, moving out of a backyard to a local park. The Matus/Kelso/George clan is a tightknit family who faces things together. The same is true for planning and executing this fundraiser. Ashli and her husband, Tom, now have help from Kristin and Mark, who relocated to Virginia; Kristin and Ashli’s parents, Terri and Jerry Matus; and the children, Morgan and Ally Kelso and T.J. and Reagan George.

Geismar Family Volunteerism Award – The Swierczewski Family

The late Bruce “Bruno” Swierczewski attended a fundraising workshop at the 1995 NFED Family Conference and decided to host the first Bruno’s Golf Outing for NFED that September in honor of his son, Eddie. That first event in his hometown of Blue, Island, Ill. was small and Bruce experienced a horrific headache. The very next day, he was diagnosed with a malignant brain tumor. Bruce continued to fight and even held a second tournament before he passed in 1996 at the age of 34.

In memory of Bruce and in honor of Eddie, the Swierczewski family decided to continue the golf outing. Bruce’s brothers, Gene and Chuck, took over recruiting golfers, volunteers, prizes and donations. Their mother, Fran Ann, oversaw the invitations, accounting and paperwork. Wives, kids, cousins, aunts and uncles all joined in to support the event and their success mounted. After the 15th Bruno’s Golf Outing, the family felt the milestone was a good time to retire.

But their supporters would have none of it. Their love for Bruce, Eddie, the family and the NFED was too great. After a one-year sabbatical, Bruno’s Golf Outing was back due to popular demand. This September marks their 21st event. Now, the next generation of the family has grown up, support the event and recruit their friends. Chuck’s daughter, Renee Swierczewski, has taken over duties for Fran Ann. Eddie golfs and speaks during the program.

In its second phase, Bruno’s Golf Outing has grown each year and is now the longest running family fundraiser in NFED history. Cumulatively, they have raised more than $256,000. We are grateful to the entire Swieczewski family for their work to raise awareness and funds for more than two decades. We especially thank Gene and Chuck for leading the team and turning their brother’s vision into a legacy that has improved the lives of thousands of families affected by ectodermal dysplasias.

 

Outstanding Service Award – Brian F. Randall

Brian Randall has been a good friend of the NFED for approximately 30 years. His relationship with our ectodermal dysplasias community began in the 1980s when a gentleman in his church, Frank Hazzard, invited him and his wife, Evelyn, to an NFED Auction. Frank, affected by ectodermal dysplasia, served on the NFED Board of Directors at the time. The Randalls attended each year and became faithful supporters.

Brian lent his expertise in finance by serving on the Planned Giving Committee and as the Financial Advisor in the 1990s before joining the Board of Directors in 1999. He has also served as treasurer of the Board and on the Development and Investment Committees. It’s his finance expertise that has guided the Foundation’s investments and sound financial policies that have made the NFED a financially viable organization for two decades.
Mr. Randall is a loyal volunteer and benefactor who you can always count on to attend an event, to support a program, and to read every piece of correspondence sent to him. His memory for detail is uncanny. Brian always likes to hear the latest stories and developments when he visits the NFED office. He’s responsible for soliciting several major bequests for the Foundation which enabled us to fund special projects that would not have been possible otherwise.

Brian is Senior Vice President of Investments at Raymond James & Associates in O’Fallon, Illinois.

Outstanding Service Award – Anil Vora

Anil joined the NFED family in 1987 after his son, Sean, was diagnosed as being affected by hypohidrotic ectodermal dysplasia. He, Sean and daughter, Aubrey, became regulars at the annual Family Conferences and this year marks the 30th straight conference he has attended.

In the early years, you could find Anil playing soccer with the tweens at the Family Conference and helping to organize an NFED event in San Francisco near his home. In the 1990s, he often spoke on panels at Conference and shared his experiences in parenting an affected child. He was a generous supporter of NFED efforts and always willing to help where needed.

In 2006, Anil join the NFED Board of Directors. He lent his financial expertise to help streamline and establish best accounting practices. The Board President since 2011, Anil has served also as vice-president and financial advisor and participated in the Budget and Finance Committee, the Development Committee, the Family Services Committee, the Human Resources Committee, the Investment Committee, the Strategic Planning Committee and the Website Committee.

This NFED dad has donated thousands of hours to the Foundation during his term as a Board member alone. He’s known for his great memory, unparalleled work ethic, big picture thinking and problem solving among other talents. While many nonprofits flounder after their founder retires, the NFED flourished under Anil’s leadership, assuring that the organization would continue as a resource for generations to come.

Anil is the Vice President of Oracle Financing at Oracle, Inc. When he’s not helping the NFED (and we’re not sure when that is), he enjoys playing soccer, traveling and painting.