Smiles for Sophie Forever

Summer 2010                                                                                                               

Searching for the perfect word, the perfect answer...
Just the other day someone asked me if working with Smiles For Sophie Forever makes the pain of losing Sophie any less.  Of course I said, "No."  I am sure the woman didn't mean to sound insensitive, but of course she wouldn't know that the ache in your heart you get from holding your daughter in your arms as she takes her last breaths will never be less.  So then her next question was, "Then why do you do it?"  I really had to pause before I answered that.  I couldn't say it was rewarding; certainly it wasn't.  Not in the sense an English teacher feels when her student says, "Thank you" after having been accepted to college.  Rewarding seems too "happy" of a word.  Writing grant letters each month to the families of kids with brain cancer is not rewarding.  Every month I read the names of the families who are struggling to pay their bills while their child struggles to live, and it brings back so many memories of our journey with Sophie.  And these memories aren't always the bad memories.  They are the memories of friends, family members, and even strangers who helped us financially, spiritually and physically.  To say we feel the need to "Pay It Forward" is an understatement. 
Our number one goal in this battle will always be a cure, but we cannot for one moment let the chance to help a family make a good memory slip by.  And for some of the families we help, their only good memory one month might be the ability to pay their rent. 
No, we don't run Smiles For Sophie Forever because it is rewarding, we do it because few others do.  To know there are families out there who don't have the support we had creates this sense of urgency to do something positive because these families truly know the meaning of hardship.   Of course the best gift we could give a family is a cure, but because the reality is that a cure probably won't be found overnight, even if we had millions of dollars, we feel impelled to do something for the here and now.   And that we ARE doing, thanks to you.  We have awarded over $122,000 in a year and a half, and we aren't stopping anytime soon.   Now if only I could find the right words to say to the mother who wants to talk to me because her child has just been diagnosed and she is in shock and full of despair ---  that would be rewarding.
With love,
Sophie's Mommy/SFSF President
JJ LipskiDIPG Spotlight: JJ Lipski

Five-year-old JJ Lipski, son of Jim and Diana Lipski of Madison, Alabama, was diagnosed with DIPG in October, 2005, after a summer of unusual problems with sight and speech and many doctor's appointments. After an official diagnosis, JJ was admitted to Children's Hospital in Birmingham to reduce swelling on the brain, followed by 30 radiation treatments at Wallace Tumor Institute, where he was also given a regimen of Temodar and steroids. JJ was an amazingly brave soul and chose to forego sedation for his radiation, remaining perfectly still, wearing his radiation mask for the entire ten-minute treatment. The results were encouraging and JJ returned to kindergarten on December 14. His January 17 MRI indicated "considerable tumor shrinkage." 
By his fantastic Give the Kids the World stay at Disneyworld in February, 2006, JJ had returned to the active, busy life of a five-year-old, enjoying his vacation with his two-year-old sister Nikki.  Although on a program of Zantac, Zofran, and Bactrim, as well as natural supplements, which he took without complaint, JJ was anxiously awaiting the start of T-ball season. Not only his maturity with the treatments, but his astuteness with life in general amazed his parents. His personal, bedtime prayers continually indicated his unbelievable faith, as well as his precocious ideas. One night he commented about, "God's big hands which could pick us all up into heaven."
Doing well in school and maintaining great T-ball stats, JJ showed few signs of slowing down. In April, Jim and Diana noticed some turning in of his left eye and decided to take JJ to National Institute of Health in Maryland. Dr. Warren of NIH labeled JJ's tumor as "low-grade" and suggested the Nuclear Magnetic Resonance Spectroscopy. The month of June brought not only a new treatment for JJ, but also news of his mom's pregnancy. In August, JJ celebrated his sixth birthday, a few weeks early, with a swimming party before the start of first grade. By September, and some growth in the tumor, JJ was enrolled in a new protocol requiring a once-a-month trip to NIH with five treatments over five days. The many visits to the area allowed for some sight-seeing trips to DC, an Orioles game, complete with pre-game activities, and several on-the-road stops. By the November visit and with a 20% increase in tumor size, JJ ended the NIH study and headed to Houston's Children's Cancer Center. Because of slight bleeding on the brain, JJ was not eligible for the study in Houston. The family returned home, but made true with their promise for another whirlwind Disneyworld vacation.
JJ remained active, but began experiencing problems with his vision, walking, and speech. In January, and three weeks early, Diana gave birth to Matthew. JJ was able to see and hold his new baby brother. On January 29, JJ was experiencing difficulty breathing and was sent by ambulance to Huntsville Women's and Children's Hospital, followed by a helicopter ride to Birmingham Children's Hospital. The tumor had begun affecting the nerves that control breathing. Prognosis was not good, but a promise of no more pain put JJ on a combination of meds, including morphine. On January 31,  the day after visiting with Nikki, Matthew, Mom and Dad, he was lifted by "God's big hands" to his new home in heaven.
This brave little boy modeled his brave parents whose foundation, I Could Be Your Child, founded in JJ's honor and memory, continues to help, support, and provide information to and about families of DIPG victims. In fact, shortly after JJ's passing and Sophie's diagnosis, SFSF VP and Sophie's daddy, Marc Quayle, spoke with Jim and remembers well Jim's comforting, helpful and supporting words.
Visit the site to see and read more about JJ, the wonderful work of JJ's family and to order the increasingly-popular "Walk With Me," grey brain tumor awareness ribbon created by I Could Be Your Child.  
Happy Heavenly 10th Birthday, JJ!

best of west article"I must do something," always solves more problems than, "Something must be done."    ~ Author unknown 

Hundreds started their July Fourth holiday with a healthy run
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So much to celebrate
Sophie's seventh birthday was celebrated with a bang on July 4, 2010! An estimated 850 registered walkers and runners braved the sweltering 90-degree temperatures and participated in the 3rd Annual Smiles for Sophie Forever Birthday Bash & Dash. After the 5K/1-mile
"dash" portion of the event, participants kicked off the "bash" with smoothies and birthday cupcakes at the finish line.
The celebration continued as SFSF supporters enjoyed a birthday party-style festival complete with games, activities, entertainment and food for the entire family.
Highlights of the event included carnival games with prizes, a hay climb, a giant sand box, kid's craft table, and sack races. Kids of all ages enjoyed complimentary cotton candy and snow-cones while hot dogs, beverages and snacks were available for purchase.
Adding to the fun were Chinese raffle and silent auction prizes.
Sophie's Daddy, Marc, and Sister, Sarah, cross the finish line.
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Actual fundraising dollar amounts were not available at the date of newsletter publication; however estimated funds raised are near $50,000. SFSF extends a huge thank you to all the participants, volunteers, donors and sponsors for making the event such a great success.
rainbow imageIt takes as much energy to wish as it does to plan. 
~Eleanor Roosevelt 
gold ribbonChildhood Cancer Awareness Month deserves attention, action

September is nationally recognized as Childhood Cancer Awareness Month. So what does this mean, officially? Will shoppers be inundated by toy stores that profess to give a portion of their sales to childhood cancer research? Will co-workers sport gold ribbons and sponsor "dress-down" days? Will newspapers be filled with stories about children who have cancer? Will products change their labels to a gold color? Will donation containers appear on store counters soliciting funds for children with cancer? Unfortunately, the answer to these questions is probably, "No, not really."
As readers of SFSF's newsletter know, childhood cancer is devastating and often fatal. To make a difference and really observe the month supposedly dedicated to childhood cancer, consider:  
  • Telling others what the ribbon means
  • Asking local merchants to allow collection jars on their counters to raise funds for childhood cancer research
  • Volunteering to make the jar
  • Writing a letter to your local newspaper about the lack of funding for research
  • Asking your schools and PTO's to invite speakers touched by childhood cancer
  • Offering to be or find the speaker
  • Asking teachers to decorate bulletin boards with a Childhood Cancer theme
  • Providing those teachers with the materials
  • Suggesting a school project collecting books for cancer patients
  • Volunteering to deliver those books
  • Writing to your congressman begging for increased government funding for childhood cancer research
  • Sharing information with anyone who will listen
  • Researching, supporting, and joining one of the many childhood cancer organizations or foundations
  • Posting a message on your social networking page and
  • Doing whatever it takes to give childhood cancer the attention it deserves and needs.
Signs of Childhood Cancer
Continued, unexplained weight loss
Headaches, often with early morning vomiting
Increased swelling or persistent pain in bones, joints, back, or legs
Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
Development of excessive bruising, bleeding, or rash
Constant infections
A whitish color behind the pupil
Nausea which persists or vomiting without nausea
Constant tiredness or noticeable paleness
Eye or vision changes which occur suddenly and persist
Recurrent or persistent fevers of unknown origin
rainbow imageChildhood is the most beautiful of all life's seasons.  
 ~Author unknown
Who we've helped
Every month, the SFSF Grant Committee approves applications for financial assistance for famillies of children with brain cancer. Grants are awarded in the amount of $1000 and renewable twice for an additional $500 each.
Since May 1 2010, the Foundation has helped 18 families and awarded $18,500 in grant money, bringing the total amount awarded to $123,300. The recipients included the families of these children:
  • Kristina, age 3 - DIPG
  • Doryan, age 3 -   ATRT
  • Ashley, age 18 - Ependymoma
  • Qunitel, age 12 - Medulloblastoma
  • Anonymous, age 13 - Right Temporal Brain Lesion
  • Dawson, age 3 -  Pineoblastoma
  • Adrianna, age 11 - Astrocytoma
  • Shana, age 22 - Anaplastic Oliagadragiema
  • Bryant, age 17 - Central Neurocytoma
  • Kaylee, age 9 - Astrocytoma
  • Kayleigh, age 10 - ATRT
  • Brian, age 10 - Pseudomeningo Meningioblastoma
  • Anonymous, age 6 - Astrocytoma
  • Corey, age 14 - Glioblastoma
  • Juliana, age 7 - DIPG
  • Samantha, age 6 - Malignant Neoplasm of Pineal Gland
  • James, age 12 - Optical Pathway Glioma
  • Ashani, age  5 - DIPG
Shawn Green, VP of Giving, accepts new applications for grants on a rolling basis. If you or someone you know would like to apply for financial assistance contact Shawn by email or click here to download the application criteria.
SFSF understand the burden that weighs heavy on the hearts and minds of families victimized by this illness and hopes this financial support eases that burden.
Applebees supports SFSF
Lunch and dinner plans were made easy on Wednesday, July 28, 2010, for all SFSF supporters as Applebee's in Avon Commons, through their Community Connections program, held a SFSF fundraiser. From 11 am to 9 pm, 15% of its dine-in and curbside orders were donated to SFSF. Customers only had to print and present the flyer sent to them via the SFSF iContact or from the Facebook SFSF group. (A great reason to join the Facebook SFSF group.) SFSF graciously thanks Applebee's for sponsoring the fundraiser, which added $78.68 to the treasury, and the 50-some who made Applebee's their choice for either lunch or dinner that hot and humid Wednesday.
 best of west article
More than just taking Mom out to breakfast
This display of photos of pediatric brain cancer victims let brunch attendees see some of who SFSF has helped.
brunch dining room
With over 276 guests, almost 100 more than last year, the second annual Mother's Day/Brain Tumor Awareness Brunch at Avon Oaks Country Club, May 9, 2010, was both successful and inspirational.
All guests were treated to a superb buffet; children busied themselves at the craft table, compliments of Pat Catan's, making cards and picture frames, with stickers, "foamies," and stamps --- along with a little body stamping; families were photographed; and mothers relaxed with Mimosas and coffee, shopped the SFSF store or  took a chance at winning over 20 raffle items donated by local businesses, friends, and family. A display of the photographs of brain cancer victims awarded grants from Smiles For Sophie Forever, brain cancer fact cards, and a short video truly made the brunch an "awareness" event.
The banquet room at Avon Oaks Country Club was decorated and ready as nearly 300 guests were seated for brunch
best of lorain county
SFSF Vice-president of Fundraising Michelle Polinko attended to all details, from getting enough high chairs to arranging for the individual cupcake favors. The complimentary photographs taken by Tonya Wagner and sent a few weeks later, provided a great keepsake for a memorable Mother's Day. Mailing costs were paid for by Bucci Wealth Management, LCC, a company owned by the brother of  SFSF Board member Dan Bucci. A generous donation of $500 from Fitzgibbons Arnold & Company Insurance helped to defray some brunch expenses. Many guests promoted the "Wear Grey in May" in observance of Brain Tumor awareness month. SFSF netted a profit of $2,366 from ticket sales, gift store sales, the Chinese raffle, and donations. SFSF thanks all attendees, donors, and supporters and sincerely hopes all mothers enjoyed their special day.
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In This Issue
DIPG Spotlight
3rd Annual Bash & Dash Recap
Childhood Cancer Awareness Month
Signs of Childhood Cancer
Who We've Helped
Applebees Supports SFSF
Awareness & Mother's Day Brunch
Lorain County Fair Volunteers Needed
Jammin' for St. Jude  

WGAR's ninth annual St. Jude Radiothon will be held December 9-10 at Midway Mall in Elyria. The two-day, 11-hours-a-day affair raises money for St. Jude Hospital. This year the event will be held on a Thursday-Friday, hoping to reach more work-day listeners. Volunteers are needed to join radio personalities and guests, manning phone lines and assisting with the event. Area residents who are available for two-hour shifts between the hours of 6:00 am to 7:00 pm, on either or both days, should contact Shirley Krcmar or Kayla Sechler
Since 2002, WGAR has raised nearly two million dollars for St. Jude, helping to insure that no child will pay for medical treatment as a St. Jude patient. 
st. jude logo


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One last chance...

Many SFSF Birthday Dash & Bash race participants, late registrants, friends, and family expressed an interest in obtaining the 2010 race T-shirts. And SFSF is happy to oblige, and even happier that supporters may be seen sporting those shirts, spreading awareness and creating publicity. So, Race Director Michelle Polinko is making one last order. Anyone interested in buying an extra shirt, or two, must order the shirts by August 26. Cost of the shirt is $10 for youth and adult sizes through XL, and $12 for 2XL, which includes mailing costs. All orders must be pre-paid. Click here for the SFSF gift store to place your order.
Bash & Dash takes top honors...again; enters Lorain County competition

For the second consecutive year, the Smiles For Sophie Forever Birthday Bash & Dash has captured first place in West Shore's live well Best of the West Competition. Earning first place in the "best charitable race" category, the Bash & Dash was featured at the Expo held April 27 at LaCentre in Westlake. According to Michelle Polinko, SFSF Fundraising VP, "Winning two years in a row has helped and encouraged us to be the best we can be, but it is only through the great community support and dedicated volunteers that we can maintain our status. So, once again, a special thanks to all who attended and helped. Your support means so much." (Editor's note: Included here is a partial re-print of West Shore's live well article covering the Best of the West winners.)  

Board member Mari Durbin's husband, Dan, and children, Anna Maria and Isaac, crossing the finish line.
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On June 3, SFSF also took part in the Best of Lorain County competition held at the Spitzer Center at Lorain County Community College.  Manning the display booth were SFSF President Emily Quayle and VP of Fundraising Michelle Polinko. As a finalist in the best charitable race category, the Bash & Dash faced some excellent competition. Results of the winners in over 50 other categories will be published in the fall issue of puLse, the Lorain County magazine.
SFSF's display booth at LCCC's Spitzer Center featured race info, photo collage and a slideshow
best of lorain county
Mark your calendars, register early
The annual St. Jude Memphis Marathon Weekend is slated for December 3-5, with race day on Saturday, December 4. Because of its popularity, maximums are set in all categories: marathon, half marathon, Grizzlies 5K, and family. Register before September 1 to insure a spot and to get reduced registration fees. For registration details, visit This annual event for runners, walkers, and St. Jude fans not only supports St. Jude, but provides a weekend of great events and Southern hospitality.
SFSF supporter and former Race Director Kristin Van Euwen has already registered for the half marathon, and  other SFSF fans will be following her footsteps, eh, running steps.
Check out this scoop
On May 15, 2010 Spoon Me, a frozen yogurt franchise, opened its doors in Westlake, OH at Crocker Park making it only the eleventh store across the U.S. and Canada.
Spoon Me has a unique business mission of caring for the body we live in, the people we live with and the earth we live on. In that vein, instead of accepting tips, Spoon Me stores' staff accept donations to a local charity each month with its Keep the Change Charity program. For the months of June and July, Spoon Me chose Smiles for Sophie Forever as its charity and dontated $417 to the foundation!
SFSF sends many thanks to the staff of Spoon Me for their support and hard work. Now that's service!
Atlas Valley Country Club supports SFSF
Monday, June 28, 2010, was a weather-perfect day for the fourth annual SFSF Golf Outing at Atlas Valley Country Club in Grand Blanc, Michigan. The Quayle family, once again, organized the event which drew 80 golfers. Marc Quayle, SFSF Marketing Chair, credits his parents, Bob and Kathy Quayle, and his brother and sister-in-law, Brett and Amy Quayle, with planning all the details, securing the prizes, and handling registration. According to Marc, "All was in their hands, well, maybe not the weather!" The tie-dye, commemorative T-shirts, available for purchase, added a splash of color to the event.
First Flight winners were: Keith Blakely, Joe McMillen, Bruce Dinger, and Hoyt Fredericks (1st place) and Marc Christenseson, Jim Aagensen, Dan McMunigal, and Bill Waggoner (2nd place). Second Flight winners were:  Chuck Robertson, Greg Kiss, Tim Lewis, and Bob Ludorf (1st place); Bob Jones, Colleen Jones, Brad Johnson, and Rick Wilson (2nd place); and Leslie Farmer, Mark Vansaw, Leon Stassinopoules, and Steven Torres (3rd place). The outing netted $4,489, a tidy sum for the SFSF coffers. SFSF thanks Atlas Valley Country Club and all the golfers who continue to support this annual event.

Supporting the golf outing for the third year in a row, Joe Szejda, Cas Kaczmarek, Carl Kaczmarek, and Rich Bozoian sport their "rainbow" apparel
best of lorain county

 best of west article
Looking for volunteers
The Avon Lake Kiwanis Club will be selling tickets at the Lorain County Fair in Wellington, OH, August 23 - 29. In return for manning the gates, the Kiwanis will receive a stipend from the fair organizers.  Being true to its charitable mission, the Kiwanis Club has offered to donate its earnings --- expected to be near $1000 --- to Smiles For Sophie Forever. However, they are short of volunteers for several shifts, since they are working two separate gates. Ticket-takers are needed for:
Mon., Aug. 24, 5:30-9:30 pm Wed., Aug. 25, 7:30 am -12pm
Thurs., Aug.26, 7:30 am - 12pm
Fri., Aug. 27, all day, 3 shifts 
Sat., Aug. 28, 12:30 pm - 5:30 pm Sun., Aug. 29, 7:30 am - 5:30 pm
Any SFSF supporters/volunteers who are able to work any of the shifts are asked to contact Kiwanis coordinator, Carol Lara at