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Earl Manns

ISN Fundraiser

I hope to have ISN run in all 50 states and internationally over the next few years.

Earl Manns and Family with Shelley Ensz, ISN Founder and PresidentI'm Earl Manns. I am forty-seven years old and live in the western suburbs of Chicago with my wife and three daughters. I am an equities/sales trader and have worked in the brokerage business for the past twenty-plus years.

My oldest daughter, Mya, who is eight years old, was diagnosed with linear morphea a few weeks ago. My wife noticed smooth skin on her right hand and arm, and we had our family doctor look at it, as well as a spot on the back of her leg that looked like a scar, which we had thought it was some sort of birthmark.

He was baffled and referred us to a dermatolgist and the diagnosis was made. We were told to put Dovonex on both Mya's right leg and arm and come back in six weeks, and meanwhile to do our own research. We did, and that is when we found this enlightening and fantastic website! Through this International Scleroderma Network website I was able to begin the education process. With the rarity and various subsets of these related conditions self-education is a must.

We determined that a juvenile specialist [either dermatologist or rheumatologist] was essential. We were referred to a juvenile dermatologist at Childrens Memorial but would have to wait weeks for an appointment. We were bummed!

After doing some additional reading via links on the website, and noticing that her skin involvement (which almost looks like a slight burn, hairless and smooth) seemed to be spreading, I called a nurse at Children's. I described Mya's condition and also noted that she seemed to be losing some mobility in her right hand.

We were told to come in that same day. Perhaps my almost blubbering (real men don't cry, do they?) on the phone helped the cause. Mya now puts Dovonex cream twice a day on the affected areas and at night we also wrap the areas in Saran wrap. She takes prednisone daily, methotrexate once a week,and folic acid six days a week. She also does exercises for her hand and arm (which are stiffening) for about fifteen minutes twice a day.

She does all this matter of factly, as part of her daily routine like brushing her teeth or combing her hair. Her leg and hand hurt at times, and she has occasional headaches as a side effect of the medication. I see her wincing at times as we go through her exercises. I ask, "Does it hurt?" and she says, "No, I'm fine, dad." She is a trooper — like so many people on this site are! I am proud to be her dad! Eight-year-old girls don't cry, but sometimes grown men do.

The sense of community on this site is a true blessing. I have spoken and exchanged emails with Shelley Ensz (thank you for your knowledge, thoughtful words and website!). I have communicated with a doctor in New Jersey who helped give me experts in the Chicago area, and exchanged emails with a mother of an eight-year old linear morphea patient in Ohio. We compared notes, and now our daughters are pen/email pals.

I talked to my wife and family and we decided we would do what we could to raise funds and awareness for ISN, to help fund research, support, education and awareness. I have run (actually, waddled) a few marathons and much like this site, running a marathon can be a spiritual thing.

I hope to have ISN run in all 50 states and internationally over the next few years. Join the sclero-excitement as a runner, waddler, corporate sponsor, or donor. Let me know your ideas! My email is [email protected].

A marathon begins with one step. Be a part of this tremendous excitement as we run for scleroderma!

Related Stories

Thanks to Earl and Delana Manns!

The nonprofit International Scleroderma Network thanks Earl and Delana Manns for their comprehensive donation to provide research, support, education and awareness for scleroderma and related illnesses. Posted 02/13/2013.

Thanks to Ron and Jo Gledhill: Silver Sponsor of Earl Manns Marathons!

The nonprofit International Scleroderma Network thanks Ron and Jo Gledhill for their Silver Sponsorship for upcoming Earl Manns Marathons. Her comprehensive donation provides research, support, education and awareness for scleroderma and related illnesses. (Also see Donate Now, Earl Manns, and Judy Tarro) Posted 09/16/09.

Thanks to George and Sarah Inglis: Silver Sponsor of Earl Manns Marathons!

The nonprofit International Scleroderma Network thanks George and Sarah Inglis for their Silver Sponsorship for upcoming Earl Manns Marathons. Her comprehensive donation provides research, support, education and awareness for scleroderma and related illnesses. (Also see Earl Manns, and Judy Tarro) Posted 09/16/09. Posted 09/15/09.

Thanks to Gene and Shelley Ensz: Silver Sponsor of Earl Manns Marathons!

The nonprofit International Scleroderma Network thanks Gene and Shelley Ensz for their Silver Sponsorship for upcoming Earl Manns Marathons. Her comprehensive donation provides research, support, education and awareness for scleroderma and related illnesses. (Also see Earl Manns, and Judy Tarro) Posted 09/16/09. 09/14/09.

Thanks to Sponsors of Earl Manns, Marathon Runner!

The nonprofit International Scleroderma Network thanks Silver Sponsor R. Hugh Fitzpatrick and Booster Sponsors Thomas and Gail Rhodes for their support for upcoming Earl Manns Marathons. These comprehensive donation provides research, support, education and awareness for scleroderma and related illnesses. Posted 03-09-09. (Also see Earl Manns)

Thanks to Debra Barrales: Silver Sponsor of Earl Manns Marathons!

The nonprofit International Scleroderma Network thanks Debra Barrales for her Silver Sponsorship for upcoming Earl Manns Marathons. Her comprehensive donation provides research, support, education and awareness for scleroderma and related illnesses. Posted 01/02/09. (Also see Earl Manns)

Earl Mann's Family Visits Sclero.org!

The Earl Mann's Family visited ISN headquarters in Minnesota, following completion of his second marathon-running ISN fundraiser in Missoula, Montana. Pictured from left are his wife, Lanie; Shelley Ensz, ISN Founder and President; Earl Manns, ISN Fund Raiser, and their daughters Faith, Mya and Madison. (Also see Earl Manns, and Shelley Ensz.) Posted 07/21/08.

Running for SCLERO.ORG!

Running for SCLERO.ORG: Sponsor Earl Manns in Missoula Marathon, July 13, 2008! I'm running in honor of my daughter Mya, and in memory of Sherrill Knaggs. (Also see Donate Now, Earl Manns, and Sherrill Knaggs)

Platinum Sponsors: $5,000
Gold Sponsors: $ 2,500
Silver Sponsors: $100
Sid & Sandy Strong
Boosters: up to $99
Kathy Brock
Gene and Shelley Ensz
Carol Kizior
Paul & Babbetta Scott
Norbert Solarz
Donors updated 07-02-08, 5 PM CT

Running for SCLERO.ORG!

Running for SCLERO.ORG: Sponsor Earl Manns in Green Bay Marathon, May 18, 2008! I'm running in honor of my daughter Mya, and in memory of Sherrill Knaggs. (Also see Donate Now, Earl Manns, and Sherrill Knaggs)

Platinum Sponsors: $1,000
Anonymous (1)
Gold Sponsors: $ 500
Joe Eberle
Chris Sonetz
Silver Sponsors: $100
Anonymous (1)
Ed Donnelly
Cordy Mack
William Iannessa
Matt Kerekes
Frank Miller
Amy Narot
Neil O'Rourke
Jesse Otzen
Chris Palermo
Deborah Quazzo
David Woodburn
Boosters: up to $99
Karen Barth
Clarice Boehmer
Maria Brumback
Rene Craig
Alan Emahiser
Gene and Shelley Ensz
Carol Ann Fisher
Mark Genovise
Tina Gibbons
Vietta Fuller
Janice Heeman
Brian Kennedy
Patty Kyle
Mary Lally
Carrie Maddoux
Marcia Matson
Jere and Jana Miller
Amanda Nadolski
Fred Nelson
Valerie Nomura
Janet Pantschoschka
Paul Sandilla
James Scalise
Karen Stanley
Julie Stephens
Stefanie Younger
Mary Ann Zabel
Donors updated 05-30-08, 1:00 AM CT

Running for SCLERO.ORG!

Running for SCLERO.ORG: Sponsor Earl Manns in Green Bay Marathon, May 18, 2008! I'm running in honor of my daughter Mya, and in memory of Sherrill Knaggs. Posted 05-07-08. (Also see Donate Now, Earl Manns, and Sherrill Knaggs)

Welcome Earl Manns, ISN Fundraiser

Welcome Earl Manns: ISN Fundraiser. I hope to have ISN run in all 50 states and internationally over the next few years. Join the sclero-excitement as a runner, waddler, corporate sponsor, or donor. Let me know your ideas! Posted 05-07-08.

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