Thursday, October 30, 2008

Our Advisors

I'd like to take a few minutes to introduce our Board. Because I do the blog postings and the office work, people mistake me as the "face behind CHERUBS"..... which is so untrue. I am one of many who make our wonderful organization run. We have the most amazing volunteers and I will be writing about them as well soon, and also adding stories and videos of members too. But for right now, I'd like you all to meet some very special people:

Parent Advisors
(in no particular order)

Judi Toth - mom of cherub with wings, Christopher Michael Toth, Judi has been a member of CHERUBS for 11 years. She was our Secretary for several years until her work and health didn't allow for volunteering as many hours as she was. Judi has spent 1000's of hours volunteering over the years, from helping to create our database to planning events in Washington DC for us, she has been invaluable to CHERUBS. Even through 9/11 when she was in the Pentagon as it was hit, she still called us to let us know she was ok and to check on other members. She often calls CHERUBS her "second baby" and she means it sincerely. When Shane died Judi stepped in and handled all of CHERUBS affairs so that I could have time to grieve my son without worrying about our organization. She also helped plan his funeral and held my hand those days following his death. That is the type of person that Judi is and I know she makes Christopher proud.

Tara Hall - mom of cherub on earth, Brandon Hall, who has taught us all a lot about feeding issues and reherniations. Tara is also our Ohio State Representative and has planned 10 years of Ohio picnics very successfully. Always ready to lend an ear or offer encouragement, Tara has been a shoulder for 100's of CDH families. When my son died Tara immediately hopped into her car and drove from Ohio to North Carolina without any hesitation, no matter that long drive or how emotionally hard it must have been for her. Tara has the highest of integrity and has been a constant source of inspiration and support to me and so many other CDH families.

Stephanie Olivarez - mom of adorable Shelby Olivarez, Stephanie joined CHERUBS just last year but within weeks stepped up to volunteer and she has become such a huge part of all we do at CHERUBS we don't even remember what it was like without her! Stephanie and her husband, Shane, held an ATV Rally in Indiana in honor of Shelby and CHERUBS and did a phenomenal job of raising CDH Awareness. Steph is our Indiana State Representative as well as our Volunteer Coordinator for State and International Reps. She also stepped up to help plan the 2008 CDH Conference and Angel Ball and without her, neither event would've been possible. She does all this, raises 4 beautiful little girls, and still keeps up with all our members offering them prayers and encouragement. Stephanie is family now and stuck with us CHERUBS members forever. :)

Barbara Wagner - mom to Logan Wagner, a teenager now.... wow! Where has the time gone? Barb has been a member for 10 yrs also I think and is such a huge help with CHERUBS I really don't know what I'd do without her! She's our Volunteer Coordinator for Committees and also holds almost every other volunteer position as well. Always cheerful, no matter what she has going on in her own life... Barb gives so much of herself to CHERUBS and CDH families. Calendars, cookbooks, anything creative.... she's our gal! She even gave me ideas for my wedding. Barb is the type of woman who makes a friend and they are like a sister to her.... we are so lucky to have her. She's our newest Advisor and we're glad to have her aboard!

Brenda Slavin - mom to cherubs with wings, Amanda and Nicholas Slavin. Brenda is the 3rd member of CHERUBS, joining us back in 1995. Mom to 2 babies lost to CDH and now a PICU nurse herself, Brenda offers a unique perspective that is so valuable to us. Also a newsletter contributor, Maryland State Representative, and conference speaker, Brenda is superwoman. She honors her babies memories, is single mom to 2 incredible kids on earth, works lots of hours helping the children in her PICU and their families and still has time for CHERUBS. Not to mention she's one heck of an amazing woman and friend. She's gotten me through grief of losing Shane, losing my sister and a divorce and kept me focused on CHERUBS.... she's done more for our organization than she knows and we love her for it.

Corin Nava -mom of cherub with wings, Gabriel Nava, Corin is easily summed up with one word - "sweetheart". Not that she's not a complicated and interesting lady but she has the sweetest personality and biggest heart and I can't imagine anyone meeting her and not immediately adoring her. She is on almost every committee, has several fundraisers throughout the year in New England for CHERUBS; whether it's baking 100's of truffles or bowling, or putting together 100's of information packets in Gabe's memory to donate to the local hospitals. The woman has energy - she does all this and has an infant, a husband, a job and she's State Representative for almost every New England state! Not to mention she's always offering encouragement and support to all the members and even offers baking advice. She's a saint... she may not agree with that statement but I still think it's true.

Darlene Silverman - grandmother to Emily. Darlene is our voice of reason and encouragement when things get rough. She's given me a virtual hug or swift kick when I need it. Her loyalty to CHERUBS and CDH families is amazing. Whether working all hours of the night with me on legal paperwork or research, she is such an amazing woman. She is the only Advisor that I haven't met in person yet and I can't wait to finally hug this woman! If it hadn't been for Darlene's constant support and encouragement, I really don't know how I would've made it through all the drama and attacks on CHERUBS in the past 2 years. No matter how discouraged I got, Darlene was right there reminding why we do what we do every day - for the cherubs and families. If there was information we needed for anything at all - she can find it. Darlene has been my guardian angel on earth and I so appreciate her and all she's done for our organization and my own sanity. :)

Elaine Moats - mom of Kristin Moats... a teenager who just got her driver's license. It still blows my mind to think she's old enough to drive now; she was so little when Elaine joined CHERUBS back in 1996 I think. Elaine... we jokingly call us "old-timers".... she's been a member of CHERUBS for almost as long as I have. Elaine has dedicated 1000's of hours to CHERUBS; all 3 cookbooks, State Representative for 4 midwest states, on almost every committee, writing 100's of letters for auctions... Elaine is just... wonderful. She is one of the calmest, most poised people I have ever met. She always knows what to say, always is quick to volunteer to help, has given so much support and encouragement to so many CDH families throughout the years. Not to mention that she's been such a source of support and encouragement to me throughout the years as well and her friendship means so much to me. I know a lot of other CDH families feel the same way.

Kara Hess - mom of Adam Hess, who is keeping his mom hopping lately and whom we hope feels better soon. Kara.... she's been an Advisor less than a year I think but she's made such an impact. Kara is so funny, so honest and blunt - and we need that! Not that we don't have Advisors who are also funny, honest and blunt... Kara is just a breath of fresh air, a new CDH mom to stir things up with all of us "old-timers". When I'm wrong, she tells me. When we throw out a bad idea, she let's us know. When one of us needs encouragement or some spiritual comfort - she's there, offering words or a laugh or a funny photo or scripture. She is such a good Christian.... one that I look up to and want to be more like. Married with 2 young boys, she has her hands full but still has time for all we have going on at CHERUBS and supporting members as well. Though Kara is a new Advisor and friend, she is a dear one... to so many of us.

Heidi Cadwell - mom to cherub on earth, Tanina Cadwell. Tanina... our walking miracle cherub... ok, all cherubs are walking miracles but Tanina is a walking miracle cherub who goes even farther than just being a "normal" kid - she's an extraordinary teenager achieving goals that would be hard for even adults to do. And a huge reason behind that is her amazing mom, Heidi. Heidi is another "old-timer", having joined us around 1998. Heidi has had more than her share of troubles the past few years but she takes on each challenge with such dignity and grace and determination.... it's so easy to see where Tanina gets all those amazing qualities (not that Frank isn't great too!). And through it all, Heidi has been there for CHERUBS. Sometimes not as much as she wants to be involved in things but we all know she's there, quietly encouraging us, silently praying for us and still wanting to help others. Heidi was a teacher for years, helping children to learn. A foster mom to so many kids, giving them a home and love. And she's held many volunteer positions at CHERUBS throughout the years as well. She has the biggest heart and cares so much for others.... the world would be a much better place if there were more Heidi Cadwell's in it.

Our amazing Advisors.... those behind the scenes with me helping to keep the organization going. Our members have no idea how much time and love they all donate to CDH families. How many hours they lose with their own cherubs and families to make sure that all CDH families have the information and support that they need. All volunteering - no one at CHERUBS is paid a salary. They all give of themselves because our cause is so important to them... and they so honor their cherubs' memorys and lives. I am so grateful to know each one of these wonderful women.

So how do you become an Advisor? Our Advisors were chosen many years ago when we needed them for updating our 501(c)III paperwork. Most of our Advisors have been on the Board since then, with a few additions that have been voted in in the past 2 years to shake up ideas a bit and we've only lost 3 Advisors in 14 years - all due to needing more time with their families and all 3 are welcome back on the committee at any time. All of them are very active in our organization as members and Advisors. They are all quick to help, respond and do what they can for CHERUBS and CDH families. We've been very lucky to have so many dedicated people who volunteer their time and hearts to CHERUBS and to families affected by Congenital Diaphragmatic Hernia.

Professional Advisors

Our Professional Advisors are equally amazing; caring for CDH babies and their families health and their rights. They have all given countless hours of advice, support, encouragement, referals, and been by our side for years - helping us to help CDH families. Without them, CHERUBS would not have come as far as we have. Their support for our organization and CDH families has been overwhelming and so appreciated over the years. They are the true fighters for CDH families and babies.

Lesli A. Taylor, MD
Professor Director, Division of Pediatric Surgery
East Tennessee State University

Rachel L. King, RN
Medical Advisor

Nurse Supervisor; Pediatric Intensive Care Unit

Duke University, Durham, North Carolina

Board Member

Vincent R. Adolph, MD
Medical Advisor
Department of Pediatric Surgery
Ochsner Clinic, New Orleans, Louisiana

Michael R. Harrison, MD
Medical Advisor
Professor of Surgery and Pediatrics
Director, Fetal Treatment Center
University of California, San Francisco

Aviva L. Katz, MD
Medical Advisor
Division of Pediatric Surgery
Alfred I. du Pont Institute, Philadelphia, Pennsylvania

Jacob C. Langer, MD, FRCS(C)
Medical Advisor
Chief, Pediatric General Surgery
Hospital for Sick Children, Toronto, Ontario, Canada

Cynthia M. Powell, M.D.
Medical Advisor
Assistant Professor of Pediatrics
Division of Genetics and Metabolism
University of North Carolina
Chapel Hill, North Carolina

Prem Puri, MS, FACS
Medical Advisor
Consultant Pediatric Surgeon
Children's Research Centre
Our Lady's Hospital for Sick Children
Crumlin, Dublin, Ireland

Jay Mark Wilson, MD
Medical Advisor
Assistant Professor of Surgery, Harvard Medical School
Associate in Surgery; Director, ECMO Program
Boston's Children's Hospital, Massachusetts

Claudine P. Torfs, PhD
Honorary Medical Advisor
California Birth Defects Monitoring Program

Betty Mekdeci
Professional Advisor
President & Founder
Birth Defect Research for Children
Celebration, Florida

M. Shane Perry
Attorney at Law
Legal Advisor
Morrisville, North Carolina

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