News and Events

Morristown High Junior Leads Ride

Reprinted with permission of the Morris County Daily Record, Parsippany, NJ
DAILY RECORD STAFF REPORTS

MORRISTOWN -- In memory of his twin sister who died seven years ago, Michael Santoro led the annual Courage Ride Saturday to raise money to try and beat the disease that took her life.

Santoro, who is now a junior at Morristown High School, was the lead biker for the event that included walking, biking and a ceremonial release of butterflies. Money raised from the event goes to the Paula Rosina Santoro Foundation, which supports research and outreach about Cushing's Syndrome.

Morris Township, Sept. 1, 2007 - Mike Santoro, 17, leads the pack in the Hike and Bike with Mike fundraiser at Loantaka Park. About 150 people turned out for the event to raise money in memory of Paula Rosina Santoro. She and her brother Mike are twins; she died of Cushings Syndrome in 2000 when they were in 4th grade. Over the years, the fundraisers have collected $65,000 for research. Karen Mancinelli photo/2007

Michael's twin sister, Paula, succumbed in December of 2000 to Cushing's, a rare disease of the endocrine system, according to Mary Donohoe, a spokeswoman for the Morris School District, which helped out with the event. Michael and Paula were fourth graders at the Normandy Park School at the time of her death.

The goal of the Santoro Foundation is to fund research so that a cure for the disease may be found, Donohoe said. "One of the projects we're funding is outreach and education to pediatricians and nurses with new information about Pediatric Cushings," Michael's mother, Pam Bennett-Santoro, said in an e-mail.

The event took place from 2 to 4 p.m., at Loantaka Park, beginning at the South Street entrance in Morristown. The Paula Rosina Santoro Foundation is an IRS 501(c)3 tax-exempt organization and a NJ registered charity. For more information about Cushing's Syndrome, go to www.csrf.net. Details about the Paula Rosina Santoro Foundation can be obtained by e-mailing jpmp010@aol.com or by calling (973) 539-9255.

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Through the Paula Rosina Santoro Foundation, we have raised more than $70,000 over the past six years to fund the activities of CSRF. This year alone, we raised more than $10,000. It's been exciting and rewarding, but the premise of the fundraiser, "Bike and Hike with Mike" has run its natural course, especially with Mike on course for college.

We ask others in CSRF to consider doing their own fundraisers to help Cushing's disease patients and to provide more money for research. While Paula and Michael's unique story drew the attention of the media, the fact is that most of the people who contributed year after year to the "Bike and Hike" weren't attracted by the media stories but were, rather, friends, relatives and neighbors who knew us and the twins. Most of the money was raised in small amounts-under $50, typically-and people seemed to appreciate that the fundraiser was held every other year (which also made planning easier for us).

There's a lot of good fundraising advice on the internet or available through local libraries. Here are just a few ideas. Keep an eye out in your local newspaper for opportunities to fundraise. Go bowling for dollars, miniature golfing, have a bake sale, garage sale, a volley ball game. Check out your local sports teams, theaters, movies, museums and work with them and fundraise. We just participated in the local mall's special event, selling tickets to an exclusive evening of shopping during the upcoming holiday season.

Take the plunge and try a CSRF fundraiser! All you need to do is ask, people's generosity will do the rest. You'll be surprised how many of your friends and relatives want to help, and understand the importance of teaching people more about Cushing's and its consequences.

John Santoro and Pam Bennett-Santoro
Paula and Michael's parents

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In the last year and a half I have had the opportunity to help several families find their way to helping their children. What a pleasure it is to hear that at least 2 children are doing well following successful surgery! Including weight loss and gains in height!!

Over the last few months I have talked to so many people who believe their children have Cushing's and I hope that I've been of some support. I tell people that I talk to all over the area and the US that I feel like I am the female Jerry Lewis. I talk to one person at a time or several people at the time. A couple of months ago our bank, Washington Mutual, had a customer appreciation day and I set up a table with the brochures and pictures and talked to so many of them about Pediatric Cushing's.

As we all know, part of getting a diagnosis is finding the right physician; one who will do the appropriate testing. Fortunately, I've been able to refer several in the Atlanta area my son's wonderful Pediatric Endocrinologist, Dr. Stephen Anderson.

In the spring of 2008 one of the sororities here in West Georgia is going to have a battle of the flag for Cushing's Awareness. I intend to contact our Senators and Congressmen and ask them to pass the bill to make Cushing's Awareness a permanent proclamation here in Georgia. I honestly believe that we have to be advocates for our children and make sure that doctors check them for Cushing's. I have said all along that I will not let one more family go through this alone and will not stand by and watch another child die because doctors don't think to check our children for Cushing's. I hope that everyone of us will continue to ask doctors to check for Cushing's and don't take obesity as an answer.

Let's make Cushing's Awareness known to all of our Pediatricians.

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A Report from American Academy of Physicians Assistants

The annual meeting of the American Academy of Physician's Assistants was held in San Francisco, May 27 to June 1. For the very first year the CSRF exhibited at the convention. Because it was our first year, we had a very poor location, but booth traffic was really, very, very good. Louise Pace, Karen Campbell and Joyce Dixon worked in the booth and we estimate that we handed out over 200 pieces of information on Cushing's and testing. The PA's were very interested in talking to us and most had never heard of the salivary cortisol test. Many thanked us for exhibiting!

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A Report From The Pediatric Endocrine Nurses Meeting

By Karen Campbell

The Pediatric Endocrine Nurses Society (PENS) held their annual meeting this year May 10-13 at the Marriott Grand Dunes in Myrtle Beach, SC. This is the first year that the CSRF exhibited at the PENS meeting. Our primary reason for exhibiting was to let the nurses know that the CSRF is there for support of Cushing's families so they can let the parents and patients know that support is available.

Since the exhibit was in a hotel, the number of exhibits were smaller than at other conventions, which gave the attendees an opportunity to visit all of the booths. About 200 Pediatric Endocrine Nurses attended, and I think we spoke with a very large percentage of the attendees. It would be nice if every show was like that! Most of the nurses had never heard of us and were very glad that we exhibited. Many had 1 to several children with Cushing's in their practice and they felt that support was needed.

Diane Lee-Smith, RN, MSN, C-PNP, presented a well attended session on Evaluating the Pediatric Patient with Cortisol Excess- Etiologies, Therapy and Outcomes. Diane mentioned the CSRF in her talk, and we had the opportunity to hand out yet more information. PENS has 2 publications that may be of interest to parents of children who have/had Cushing's. One entitled, Cortisol Replacement Therapy ($8.00) is intended for parents and children and discusses replacement, how to handle emergencies and give shots. The second, titled Cushing's Syndrome In Childhood and Adolescence ($10.00) discusses all phases of Cushing's and while written primarily for nurses, could also be useful for parents. You can order these publications through the PENS on-line store at: www.PENS.org, or call 850-484-5223 or Toll Free: 877-936-7367. Next year's meeting is April 18-21 in Portland, OR, and while
the CSRF would like to exhibit, funds and personnel will be required to do so.

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