Organizing Medical and Dental Information

It is a good idea for you to keep your medical information in a personal file. People tend to change physicians more frequently as jobs and insurances change. You may choose to enter medical or dental information in a laptop, or keep hard copies in a notebook or binder. Dating all of your entries will make for more useful records. And as with any important information, if you save it to a computer, be sure to have a backup file. This information will be especially helpful when a new caregiver is involved. As a starting point, you’ll want to keep track of the following:

  • Results of various tests
  • A listing of allergies
  • A listing of medications and dosages
  • Names and phone numbers of your medical and dental care team
  • Health information, hospital phone number, social security number, and insurance information
  • Records of what was discussed during a medical visit/phone conversation and by whom
  • Notation of changing symptoms
  • Copies of your medical records.

You are legally entitled to copies of your records from doctors or dentists, but you’ll need to follow the organization’s policy for requesting them. Frequently, there’s a charge for these copies. But by keeping all records in one place, you can easily share these with other health care providers that you may see in the future.

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We Volunteer So Others Don’t Feel Lost

by James Kluzek

We were asked why we volunteer for the NFED. It all started November 16, 2000 when our

Kluzek Family III

Christina, Sue, James & Jimmy

daughter, Christina, was born with a genetic disorder called Goltz  syndrome. This day changed our lives forever.

We had never heard of this syndrome and more importantly most of our doctors knew nothing about it either. We felt lost and alone and didn’t have a clue where to turn.

Then my wife, Sue, found out about an organization called the National Foundation for Ectodermal Dysplasias on the internet and it changed everything for us.

We attended our first Family Conference in St. Louis in 2006 and all we could say was WOW. For anyone out there who has not attended one yet all I can say is just do it. From the minute you walk in, you will be glad you did.

It was life changing for us. We were no longer alone. My son who was only eight at the time and summed it up when we asked him what he thought after the conference. He said, “It is really nice when somebody asks how Christina is and they really mean it.”

Christina

Christina

At that conference, we met the NFED staff who are the most wonderful caring and helpful individuals we have ever met. We met other families who had gone through what we had and were going through now. These people are now part of our family and we can call them any time to exchange information or just talk.

To see our daughter making friends with other children that were going through all the same things she was going through still brings tears to my eyes even 10 years later. She gets excited about seeing all her friends every year.

Our son who is not affected has made friends from all over the country who he has grown up with and keeps in touch. The 8-year old boy from our first conference is now 18 and a sophomore in college. Last year, he served on a panel at conference, to answer questions and talk about his experiences growing up with a sister affected with ectodermal dysplasias. We were so proud of him when he agreed after being asked by the NFED.

Volunteering at Conference doesn’t have to be a big, time-consuming activity. It can be as simple as sitting at a table and handing packets out at registration, or working at the booth selling t-shirts.  You can volunteer for as little as one hour.  If you want to give more time, you can volunteer to be on a committee. All are great ways to help and even better ways to get to know other people in the organization.

Blue Jean DayFundraising is simple too. My wife and I are both teachers so we went to our superintendents and asked if we could do jean days for a month at our schools. Faculty, staff or anyone who works at the school could wear jeans instead of regular school clothes if they donated money every day. In one month, between my wife’s school and mine, we were able to raise about $1,500 last year and $2,300 this year. It was an easy way to raise money and educate people at our schools what the NFED is about and all that they do for people.

So why do we volunteer to help at Conference? Why is my wife, Sue, a Family Liaison for Illinois? Why do we do fundraisers for the NFED? We do it so maybe we can help another family who is feeling lost and doesn’t know where to turn. We do it so they can find the most wonderful organization and people like we did and hopefully change their lives like they did for us.

So, please, the next time you think maybe I should volunteer or try to do a fundraiser (big or small – everything helps), do it. Call Lea at 618-566-6871 or email her or Seth. They will help you put your ideas to work or help you come up with an idea. This is your organization and by helping in any way you can only make it better.

Please complete this form to start volunteering. Lea will be in touch with you.

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Volunteers Helped Run Family Conference

by Lea Richardson

Our Volunteer Spotlight this month is the Family Conference Committee and all of the Family Conference volunteers. They pitched in and helped with

  • Setting up and taking down,
  • Manning the registration, promotional items, volunteer and fundraising tables,
  • Facilitating and presenting in Workshops,
  • Monitoring the Silent auction and distributing the mystery bags,
  • Executing the Create-a-Smile,
  • Taking photographs and running the photo studio,
  • Setting up the audiovisual equipment,
  • Running the chance auction, and
  • Coordinating dental evaluations.

You ALL are the best of the best. You have been very generous with your time and skills in supporting the Family Conference and all who benefit.  We are grateful because we couldn’t have accomplished this Family Conference without your dedicated helping hands.  You achieved all the important tasks with little fanfare or recognition.

Nothing teaches hope, kindness, courage, and compassion like helping others.  Supporting you, supporting each other. Thank you! Thank you!

See everyone in Washington, D.C. next year in July for another exciting Family Conference.

35th Anniversary Celebration: A Magical Night for the NFED

Thank you so much to everyone who participated in our 35th Anniversary Celebration dinner! We are happy to say we surpassed our goal of $50,000 by raising more than $62,000 for our mission.

Thank you all for your support and for making the event a success. We had more than 250 attendees who enjoyed our silent auction, mystery bags and our Create A Smile live auction.

We presented Outstanding Service Awards to seven individuals and families. Executive Director Mary Fete made a beautiful tribute to the Joliet Woman’s Club for their many years of support and to the Meier family in memory of Bev Meier, our very first employee and dear friend.

We thank our Chair, Ruth Geismar, and Celebration Dinner Committee members, Evelyn Randall and Christine Throm, for their hard work and dedication in the planning of this event.

We give much thanks to our Founder’s Circle Sponsor, Oracle America, Inc. and to Gold Sponsor, the Vora family. To all of you, thank you, thank you, thank you!

 

 

Seven Honored for Service to Ectodermal Dysplasias Community

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.

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Dr. Tim Fete and Mary Fete

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.

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Dr. Richard Lewis and Mary Fete

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.

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Ruth Geismar and Mary Fete

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.

 

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(L-R: Kristin Matus-Kelso, Mark Kelso, Ashli Matus George, Morgan Kelso, Mary Fete, Terri and Jerry Matus. Ally Kelso is dodwn front.

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.

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Gene, Joey, Chuck and Nadine Swierczewski, Mary Fete, and Eddie Swierczewski

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.

 

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Brian Randall and Mary Fete

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.

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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.