8th Annual EPT Golf Outing Scheduled for Monday 6/8/15
While the primary goal of this event is to enjoy a great day with friends and family, we are also able to raise awareness and funds in support of families coping with juvenile rheumatoid arthritis. We would be grateful if you shared this website with friends and encouraged them to participate by registering to golf, asking your company to consider a sponsorship opportunity, donating a raffle/auction prize, and/or by making a 100% tax-deductible contribution to Emily's Pink Team (EPT is now recognized as a 501.c.3 non-profit corporation!). To support the event, please click the "Register Now", "Sponsor Now", and/or "Donate Now" links below.
Speaking of sponsors, a very special "thank you" goes out to American Equipment & Fabricating Corp. of East Providence RI. They have stepped up as this year's Pink Sponsor, the highest level of support that we've requested. Several levels of sponsorship are still available, and it is important that we fill ALL of them... Thanks again for your consideration and assistance.
6th Annual Golf Outing, 6th year of Record Numbers
The weather did not look much better on the morning of "Take 2", but that did not stop the masses from coming out in support of the event. All told, more than 110 people were present to enjoy what turned out to be a very nice afternoon of golf. During the dinner which followed, the crowd heard from Emily's Dr. Rothman of Shriners' Hospital, and gave a very warm and heartfelt ovation to lead volunteer Sue Sleczkowski. At the conclusion of a very successful silent and live auction, the crowd refused to leave... I'm not sure who locked up that night, but we were certainly very grateful for everyone's presence, participation, and support througohut the evening.
When the dust settled, more than $18,000 was raised for the Arthritis Foundation and Shriners' Hospital. This amount shattered last year's record donations by more than 50%, and brought the event's 6-year fundraising total just over the $50,000 mark. Our sincerest thanks go out to everyone who continue to support this cause year after year. We look forward to seeing everyone back in June of 2014!
3rd Annual Golf Outing a Great Success
[Story updated August 2010]
Thanks to the 70+ golfers who participated in our 3rd Annual "Emily's Pink Team" Golf Outing on 6/11/10. Through everyone's generosity, we raised over $5,700 for the Arthritis Foundation and Shriners' Hospital, bringing our 3 year total to over $12,700.
Shriners Vote to Keep Springfield Hospital Open
The Springfield Shriners Hospital will stay open after a vote was taken in San Antonio, TX Monday afternoon. The vote, initially, was slated for later in the week, but trustees moved it up in the agenda, citing the importance of the matter. After months of waiting and hoping, Melissa Lukasik got the news she was waiting for.
"It was shocking, but it's good news," she says.
The Shriners hospital in Springfield will stay open. The Children's Hospital has a special place in the hearts of the ladies at The Finishing Touch in South Hadley. A stylists' nephew needs surgery, and Melissa's husband, is an employee there. With lives and jobs on the line, they've started a Facebook page and held numerous benefits in hopes of keeping it open.
"It's just a personal thing for me, being in the community, knowing the good that they do. It's great for everyone," Lukasik says.
Six Shriners hospitals faced looming closure after an endowment fund that supports the hospitals, dropped from $8.5 billion to $5.2 billion over the last year.
After months of waiting, the crucial vote was supposed to be held later this week at the Shriners annual meeting in San Antonio. However, Al Zippin, from the Springfield Hospital's board of governors, spoke up in Monday's meeting. He spoke to CBS 3 Springfield via phone in San Antonio.
"We're a system, we're a fraternal organization. We took vows at various points and we need each other," Zippin said to his fellow Shriners.
After his stirring speech, the planned talks were scrapped. Zippin tells us, the fate of the six hospitals went straight to a vote.
"This afternoon, they said we're going to go right into the hospital business because that's what's on everybody's mind and we're going to get right to it," Zippin says.
Two thirds of the 1300 trustees voted to keep it open. Now, the real work begins. Other Shriners officials tell us a 25-30 percent reduction at the hospital is vital.
To get there, some are thinking of outpatient surgery, third party paying and partnering with local hospitals as options. Those decisions will be made later in the week. But to those who fought for the hospital, keeping it open is the only thing that matters.
"I think everybody in the community that even donated five dollars or two minutes of their time, by helping anyway they can, even emotionally," Lukasik says.
Zippin assures residents back in Springfield that the vote will stand. However, he says, it's crucial that the necessary decisions be made on where to cut, so the hospitals can remain open.
Emily Strikes Again!
On Sunday, April 26, 2009, one week after speaking at the rally to save Shriners' Hospital (see article below), Emily was featured as the first of a four-part series on Springfield's WGGB Channel 40. The 2-minute video can be seen by clicking here.
Emily Speaks at Shriners' Hospital Rally
On Sunday, April 19, 2009, Springfield's Shriners' Hospital held a "spirit rally" to raise support for their hospital which, due in large part to the sharp downturn in the economy, is faced with some very difficult budget decisions at an upcoming delegates meeting in July. Specifically, 5 of Shriners' 22 hospitals have been targeted for possible closure due to lost revenue from endowment funds, and the Springfield hospital finds itself directly in the crosshairs.
WWLP News Channel 22 in Springfield, MA covered the event, and their website contains a 2-minute video which captured a portion of Emily's speech. WGGB Channel 40 also aired a segment that ends with Emily's closing remarks. A hard copy of her speech is shown below - and she litterly came up with this entirely on her own!
Coping with Juvenile Arthritis
Early diagnosis helps minimize effects of disease
NOT JUST A DISEASE THAT HITS ADULTS
By Craig S. Semon TELEGRAM & GAZETTE STAFF
Monday September 8, 2008
“The most common myth is arthritis is a disease of adults and children do not get arthritis,” said Dr. Robert P. Sundel, program director of rheumatology at Children’s Hospital Boston. “While it is relatively rare, and far less common in children than in adults, it’s nonetheless an important disease to recognize and diagnose, primarily because it is so treatable and controllable. And, if it is missed or the diagnosis is delayed, it can have permanent repercussions on the child’s functioning in life.”
Dr. Sundel said the most important symptoms of juvenile rheumatoid arthritis are pain, swelling, tenderness and stiffness of joints, especially morning stiffness that lasts for 30 minutes or more. If children start complaining of joint problems, it’s time to have them checked out.
A 2007 U.S. Centers for Disease Control and Prevention study estimated that 294,000 U.S. children (or 1 in 250) have been diagnosed with arthritis or another rheumatologic condition. About 5,900 children in Massachusetts have been diagnosed with juvenile rheumatoid arthritis. This includes 4-year-old Claire Sosik, daughter of Mathew and Janice Sosik of Sturbridge, and 7-year-old Emily Tonning, daughter of Robert and Jennifer Tonning of Holden.
Claire was very young and so it was difficult to determine when she was in pain. “If she felt pain, she was expressing it in a way like if I put her down and her foot went forward, she would cry out. … We just thought she was having a fussy little girl thing.”
That all changed one night when Mrs. Sosik was reading a bedtime story to Claire and noticed that her right ankle was swollen.
“It was very swollen. It wasn’t black and blue, just big,” Mrs. Sosik said. “That’s when the whole thing started.”
At first, the family pediatrician told the Sosiks that their daughter was a “little knobby kneed.”
After going to Claire’s regular pediatrician, the Sosiks followed up by seeing a local orthopedic doctor, then an orthopedic doctor at Children’s Hospital Boston, where, after two-and-half-hours, the family was sent to the rheumatology department. There, Dr. Sundel diagnosed her with polyarticular juvenile rheumatoid arthritis, which typically affects five or more joints.
They were overwhelmed by the news.
“We had no idea that arthritis could affect children,” Mrs. Sosik added. “We drove home in our truck and we were shell-shocked.”
The first drug treatments the Sosiks tried on Claire didn’t seem to help. And they were concerned about the risks posed by the drugs.
“So here’s a kid I’d breastfed. I give her organic milk.” Mrs. Sosik said. “The feeling of putting something I have to put on double plastic gloves for — I can’t let it touch me at all and you shouldn’t even be breathing it in — and I got to put it in this little’s baby’s mouth, it was awful.”
Then the Sosiks started giving Claire methotrexate by injection. Claire began seeing physical therapist David Houle at Quality Physical Therapy in Sturbridge and naturopath Paul Herscu at the New England School of Homeopathy in Amherst.
In March, the Sosiks received news that Claire was in remission from juvenile rheumatoid arthritis. Now she is keeping up with her older siblings, Ella and Anna, ages 9 and 7, running in and around the house.
And, as her father puts it, “Claire gets to party like a rock star now.”
Two years ago when the Tonnings were told that their daughter, Emily, then 5, had juvenile rheumatoid arthritis, they were relieved. Because juvenile arthritis is so rare, Emily’s case had gone undetected by her pediatrician for a few years and was misdiagnosed numerous times. Now, they finally had a diagnosis, and Emily was seeing specialists and getting treatments.
“Emily always had joint pain and the doctor through the years said it was growing pains because she’s very tall for her age,” Mrs. Tonning said.
Two summers ago, Mrs. Tonning noticed Emily had a rash all over body and a high fever that would climb to 103 degrees and then suddenly go down back to normal.
When the Tonnings took their daughter to the pediatrician, she diagnosed Emily with Fifth disease, or parvovirus B19, a mild viral illness that most commonly affects children. So, as instructed, they waited it out, and the rash, the fevers and the joint pain became increasingly worse. After the fifth week, Emily couldn’t get out of her bed because it was excruciating to do so.
“She was in so much pain. The rash was just angry and all over her joints. And I went down one day and said please do some blood work on her, and they did,” Mrs. Tonning recalled.
Emily was diagnosed with systemic onset juvenile rheumatoid arthritis. Despite finally receiving the right diagnosis, Emily deteriorated significantly during the nine months she was being treated with prednisone, Mr. Tonning said.
During a parent networking session sponsored by the Massachusetts Chapter of the Arthritis Foundation, another parent suggested the Tonnings get a second opinion. Mr. Tonning credits this chance encounter for saving his daughter’s life.
At the National Juvenile Rheumatoid Arthritis Conference last summer in Hershey, Pa., the Tonnings found Dr. Deborah Rothman, director of pediatrics and rheumatology at Shriners Hospital for Children in Springfield.
“Dr. Rothman did an examination of Emily from head to toe. It took hours and she pulled me aside into her office and put a box of tissues in front of me and said, ‘Mrs. Tonning, there’s no easy way for me to tell you this. Your daughter is in a terrible condition and she needs a medicine that takes two months, and your daughter doesn’t have two months. We need to start medication immediately and aggressive therapy.’ Since then, things have changed. Her care has changed. Her situation is much better.”
“Although she is by no means cured or pain-free, Emily’s life has improved dramatically,” Mr. Tonning said. “A year ago, it took her more than an hour to get out of bed each morning. She could not walk up or down a single flight of stairs, and she would often need to be carried or pushed in a stroller wherever she went.”
Emily is a second-grader at Dawson Elementary School in Holden, and she looks, acts and plays as other children do, including her 9-year-old brother, Robert. However, Emily does have a wheelchair as a backup for long distances.
“She’s amazing,” Mrs. Tonning said. “She’s able to go to school like everybody else. She’s a fast runner in her gym class. She’s a lot better than she was, but she keeps her pain and her limping to herself.”
Mr. Tonning said the experience has reminded him how remarkably brave, tolerant and resilient children are.
“Our daughter has endured pain and inconvenience that is incomprehensible to me, yet she hardly ever complains,” Mr. Tonning said. “When we take Emily to her appointments, we are surrounded by children who are badly burned and missing limbs, but none of them seem to feel sorry for themselves. I’ll never have a fraction of the strength or patience that any of these kids possess.”
Dr. Sundel said it’s important to reassure parents that juvenile rheumatoid arthritis remains a very rare condition, so much so that it’s defined by the National Institutes for Health as an “orphan disease” because of the small number of cases in the country.