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Emily's Intro...
Scattered thoughts on a scattered life
How did it get to be December? One day, summer is over, school bells ring, training for the St. Jude run begins, germs spread, kids get sick, Thanksgiving comes...and now snow, and it's time for Christmas preparations.
Although I love participating in the St. Jude marathon weekend, I can't believe how time-consuming and grueling it can be. I'm writing this just days before the race, hoping that our reports of the weekend meet all our expectations. Some days when I wanted to just sit with Marie, while waiting for Sarah to get off the school bus and tell me about her day, I had to put that idea on hold, either because there was training to do, clothes to wash, dinner to plan...all those menial, yet important tasks.
Getting a hold of myself, I remember that December and Christmas are about love, hope, faith, and peace. And today's most important tasks are (1) finding Fred, Sarah's elf, (2) comforting Marie, with her cold, and (3) even gearing up and packing for St. Jude.
If my thoughts are scattered here, it's because life is scattered, but that's okay. Things will get done. There's love to share, kids to hug, songs to sing, people to appreciate, and memories to make. Christmas is coming. May yours be filled with love, peace, joy, happiness, hope (good food, family, and friends, too) ---- all that makes the season merry and bright! Merry Christmas! Happy New Year!
Sincerely,
Emily Quayle,
SFSF President and
Sophie, Sarah, and Marie's Mommy | |
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DIPG Spotlight: Noelia Hurtado
Noelia Sofia Hurtado --- the three-year-old senorita with the golden smile is this month's Smiles for the Season Spotlight child. With her December 3rd birthday, Noelia's name reflects her Mexican heritage and traditions, that of celebrating one's namesake, as well as one's birthday. And Mexican traditions, the Spanish language, Mexican foods, and the Hispanic spirituality are all so evident among Noelia's entire family.
Diagnosed with DIPG in February of this year, Noelia displayed her first symptoms of limping and holding her right hand close to her body on Valentine's Day. Several trips to the ER, first with X-rays and then a CT scan, sent Noelia and her parents, Cristina and Roberto to Children's Hospital in Peoria, IL, which confirmed the diagnosis with an MRI.
The Hurtados wasted no time, and with the cooperation of the Peoria doctors, called St. Jude in Memphis. Within the week, Noelia, her older sister, Alexandra, her mom and dad were off to Memphis. Older brother, Christian, manned the home front. During the first week at St. Jude, Noelia and her family met with doctors, nurses, a social worker, and a Child Life representative. With her initial testing complete and her port in place, Noelia was ready to begin her radiation, but only after a weekend back home in Bettendorf, Iowa.
Back at St. Jude with her mom, Noelia began her 6 weeks of radiation during the first week of Lent. Throughout the weeks of treatment, a constant brigade of family members made the trip to Memphis. Cousins Yvonne and Lizette spent their spring break in Memphis, helping Cristina and Noelia. While there, they painted Noelia's brick for the soon-to-be-dedicated St. Jude Garden. Although Cristina stayed in Memphis with Noelia at the Ronald McDonald House for almost the entire time, she was afforded a week's respite when Marici, Cristina's sister and Noelia's godmother, and Alan, her fiancé, took over the care giving duties.
Noelia adjusted well to both the many caregivers and the radiation treatments, even assisting the nurses with her own sedation procedure. When Mama Rosa and Papa Lalo arrived from Mexico via Greyhound bus, Noelia had shown improvement. During her paternal grandparents' visit, a spring tornado in Memphis sent the entire Ronald McDonald house to an evacuation level, adding tension to an already stressful ordeal.
Dr. Baker, Noelia's oncologist at St. Jude asked Noelia to be featured in a medical journal article, highlighting him and his work at St. Jude. In addition the Memphis press asked that Noelia's picture also be featured in an article about the new St. Jude Garden. Publicity attracted sweet Noelia because she was then asked to participate in ALSAC's multicultural fundraising efforts. Well versed in the Spanish language and traditions, Noelia and her family made excellent representatives for St. Jude.
Noelia's cousin Bobby, who also came to Memphis, to help with Noelia's care was rewarded with opening game tickets to a Grizzlies basketball game. According to Bobby, the tickets were like being given "a bar of gold."
The family returned to Iowa to celebrate Alex's First Holy Communion on April 9th; accompanying Noelia back to Memphis for her final week of treatment were both mom and dad. The family's celebrating mode came from Noelia's post-radiation MRI which indicated 50% tumor shrinkage.
Home for the summer, Noelia and her family met with a naturopath and chiropractors and celebrated the high school graduations of Yvonne, Lizette, and Christian. A summer filled with typical, warm-weather activities followed, with monthly check-ups in Moline at a St. Jude affiliate clinic held at Illinois Children's Hospital; another visit to St. Jude in July found Noelia in great spirits and they made a pit stop in St. Louis to enjoy the sights and Six Flags. With Yvonne offering her summer to babysit Noelia, Mom and Dad were able to return to their full-time jobs at John Deere Seeding and the Social Security Administration, respectively. Alex was able to attend YMCA/Genesis Sibling Camp, sponsored by Gilda's Club and Noelia met with her Make-A-Wish representatives and her trip to Disneyworld is scheduled for March, 2012, during spring break. Several area fundraisers for Noelia also kept the family busy; family, friends, and the St. John Vianney Church community in Bettendorf, IA, worked diligently for Noelia and her family.
In October, Noelia and her family were featured in C.O.L.E.S. Foundation website: www.colesfoundation.org, providing additional awareness of DIPG.
An October follow-up at St. Jude indicated a slight tumor enhancement, but the Hurtados are looking forward to the beautiful season of Christmas. Follow Noelia's story and read of Cristina's incredible recounting of life at St. Jude and Memphis, as well as her daily, positive thoughts, at www.caringbridge.org/visit/noeliahurtado/journal
SFSF is happy to be among the financial supporters of Noelia and her family. |
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When we recall Christmas past,
we usually find that the simplest things, not the great occasions,
give off the greatest glow of happiness.
~Bob Hope |
SFSF St. Jude Marathon Team sets records, heads to Memphis
Front and back of Team SFSF's race shirt.
The Smiles For Sophie Forever team, nine-strong, will participate in the St. Jude marathon weekend, Dec 2-4. The team, including Leslie Farmer, Susie Miklaski, Dana Mueller, Emily Quayle, Jennifer Roncone, Colleen Roth, Sarah Smith, Kristin Van Euwen, Amy Wilson, has raised a total of $24,847.48 so far (just short of their $25,000 goal) and is among the top 25 fundraising teams registered. With the exception of full marathoners Colleen Roth, Kristin Van Euwen, and Amy Wilson, the remaining six registered for the 13.1 half. Farmer, Miklaski, Quayle, Smith, and Van Euwen are all repeat participants; this is Emily's fourth St. Jude race. Although the team originally numbered eleven, two registered participants, Elizabeth Gedeon and Kim Walters, had to forego the Memphis trip for personal reasons, but contributed nonetheless through their St. Jude Hero fundraising pages. Kristi Kiehl, a friend of Leslie's registered as a fundraising hero. Because of the popularity of the St. Jude Marathon Weekend, registration closes months before the weekend. Planning months ahead with work, family, kids, and illnesses put a little crimp in the team. "The best laid plans of mice and men often go awry."
There were many firsts for this year's team, among them: 1.) a $10,000 donation from SFSF, 2.) all registered as St. Jude heroes,3.) the largest number of team members to date, 4.) the largest amount raised, 5.) various fund-raising efforts and 6) a unique competition.
Sarah Smith sought donations during the week of Oct. 25-Nov. 1, in response to a St. Jude contest to get the largest number of on-line donations and win an iPad2. Sarah managed to get 29 individual donations, and won the iPad2, which she graciously donated to SFSF to be used as a raffle prize. (See iPad2 article elsewhere in newsletter for details.)
Team members also discovered other means of fundraising; Leslie Quayle hosted a girls night out party with sales consultants from Tastefully Simple (Monika Hutchison); Thirty-One (Sarah Smith); Usborne Books (Colleen Springs) and Scentsy (Kristin Van Euwen) donating a portion of their commissions to the SFSF team. Team members and sales consultants Kristin Van Euwen (Thirty-One and Scentsy) and Amy Wilson (Uppercase Living) also hosted parties in Avon Lake, donating a portion of their commissions. Susie Miklaski held a "Go for the Gold Drive" at Riverview Community High School during September (Childhood Cancer Awareness Month, symbolized by the gold ribbon). The gold items, donated by students and staff, were sold and the money donated.
Dana Mueller, Colleen Roth, and Kristin VanEuwen will be accompanied by their husbands, who will provide the three with their own personal cheerleaders.
The team will wear matching shirts sporting Sophie's hand-drawn rainbow on the front and pictures of Sophie on the back. Claiming to always be "chasing rainbows," the team vows to be back next year,"
**There's still time to help Team SFSF meet their $25,000 fundraising goal as the team fundraising page will be available through the end of the year. Donations can be made by clicking onTeam SFSF's fundraising page. Thanks for your support!! |
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Gifts of time and love are surely the basic ingredients of a truly merry Christmas.
~Peg Bracken
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stella & dot offers jewelry item s
to benefit SFSF
Aimee Ross, a sales consultant for stella & dot is sponsoring a trunk show, with 100% of her commission earmarked for Smiles For Sophie Forever. The show, which began in the fall will continue through the month of December, in time to purchase a simple and special gift of earrings, bracelet, or necklace for all the females on your Christmas list. Orders may be placed by visiting www.stelladot.com/aimeeross. At check out, please click on "Leslie Quayle Farmer," Sophie's aunt, who is working with Aimee on the fundraising event. In addition to the commission, Aimee is offering the hostess rewards, of free and half-priced items, to SFSF. SFSF is grateful to Aimee for her generous endeavor. |
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SFSF grants approach $250,000
Since September 1, 2011, the Foundation has helped 18 families and awarded $18,000 in grant money, bringing the total amount of family grants awarded to $191,940. The grand total donated by SFSF, including donations to The Cure Starts Now ($32,000) and St. Jude ($25,000), is $248,940.
Every month, the SFSF Grant Committee approves applications for financial assistance for families of children with brain cancer. The children of the families who received grants in September, October and November are:
- Melanie, age 18 - medulloblastoma
- Anonymous, age 6 - astrocytoma
- Anija, age 5 - DIPG
- Pierre, age 14 - craniopharyngioma
- Kaylee, age 10 - astrocytoma
- Doryan, age 4 - ATRT
- Bryon, age 5 - optic glioma
- Tayler, age 19 - craniopharyngioma
- Sydney, age 10 - brainstem/upper cervical cord tumor
- Rosemary, age 7 - pilomyxoid astrocytoma
- Noelia, age 2 - DIPG
- Nadia, age 7 - medulloblastoma
- Andrew, age 1 - ATRT
- Torin, age 9 - PNET
- Holden, age 14 - astrocytoma
- Anonymous, age 1 - anaplastic ependymoma
- DeVante, age 9 - DIPG
- Espn, age 4 - DIPG
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Christmas is not a time or a season but a state of mind. To cherish peace and good will, to be plenteous in mercy, is to have the real spirit of Christmas.
~ Calvin Coolidge
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Pie Fundraiser helps 
Thanksgiving dinner hosts
Serving pies for Thanksgiving dinner dessert was a little easier this year thanks to the SFSF Mama Jo's pie fundraiser. The pies, available in 18 varieties, ranged in price between $9.75 and $11.00. The sale of 107 pies netted $428 for SFSF coffers. Pies were available for pick-up on the Tuesday before Thanksgiving at Pembroke Kids, insuring freshness and still allowing time for day-before, at-home preparations.
SFSF Board President Emily Quayle and Board Treasurer Andrea Bucci worked the distribution; Board members Elizabeth Gedeon and Kim Walters helped with the unloading and set-up. SFSF thanks all who ordered pies, handled and secured the orders, worked the distribution site, and Pembroke Kids for offering the pick-up site.
Thanksgiving blessings to all, especially the dinner guests who feasted on the desserts and saved so many hosts and hostesses so much kitchen labor. |
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2011 SFSF Christmas ornament now on sale
  
The fourth annual, commemorative SFSF Christmas ornament is now available. The 3 ¼ inch shatterproof ball comes in three rainbow colors: red, green, and blue and is dated and imprinted in silver with the SFSF logo. The individually gift-boxed ornament sells for $8 or 2 for $15. A limited number of ornaments has been purchased; they are available on a first-ordered, first-come, first-served basis, by contacting Elizabeth Gedeon at 440-832-7648 or elizabeth@smilesforsophieforever.org. Online orders can be placed via the SFSF website "Gift Shop." Color preferences can be indicated, but due to the limited number cannot be guaranteed. Although there are no 2008 ornaments available, there are limited numbers of the 2009 (clear acrylic diamond with logo) and 2010 (rainbow snowman) ornaments in the on-line gift store. |
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Christmas is not as much about opening our presents as opening our hearts.
~ Janice Maeditere |
Encana 's Chili Cook-off spices SFSF's pot
 | | Imperial Storm Trooper (Sandy Zdunich), Han Solo (Stephen Pope), Yoda (Ramiro Martinez), Princess Leia (Jason Powell), Luke Skywalker (Dawn Miklaski), and Darth Vader (Niki Hughes) make a command performance in Encana's 5th Annual Chili Cook-off, held October 27, at the Crown Plaza Hotel in Dallas. |
"A long time ago (actually it was October, 2011) in a place (State of Texas) far, far away... an Encana team, headed by Dawn Miklaski, Sophie's aunt, made a pot of chili and entered the Fifth Annual Chili/Gumbo Cook-off, with the theme Star Wars: The Chili Strikes Back. Dawn and her co-workers, Niki Hughes, Ramiro Martinez, Stephen Pope, Jason Powell, and Stacy Zdunich dressed as Star Wars characters and beckoned their taste-testers. Although the team's chili did not win the top prize, the team was awarded first prize and $1000 for "best costume." The $1000, plus the $100 prize for entering, was given to their charity of choice: Smiles For Sophie Forever.
Each year Encana, through its Encana Cares program, sponsors a charitable cook-off in which Encana teams create their best pot of chili or gumbo. Encana employees are encouraged to not only enter their concoctions, but also come to the cook-off to taste test and vote. This year's event was held at the Crown Plaza Hotel, October 27, 2011. Teams are also encouraged to get creative with their displays.
Sophie's godfather and Emily's brother, Charly Miklaski, married Dawn (Heffernan) Miklaski this past summer. Dawn didn't waste any time joining the family's SFSF fundraising efforts. This is the second year SFSF was awarded funds from the chili cook-off. Both Dawn and Charly work for Encana in its Dallas office. SFSF thanks Encana, Dawn and her team for naming SFSF as its charity of choice and for its clever presentation. Next year... Return of the Team, perhaps. |
SFSF fulfills mission of supporting
pediatric brain cancer research
In keeping with the mission of funding pediatric brain cancer research, SFSF was extremely pleased and proud to be specifically mentioned as a supporter in the Sept. 19, 2011 on-line edition of Journal of Clinical Oncology. The article, entitled "Key regulatory genes often amplified in aggressive childhood tumor of the brainstem," explains the St. Jude research conducted on 43 donated tumors. Not only have significant properties of the tumors been identified, but those properties are being used to determine a treatment protocol. According to Suzanne Baker, PH.D., the paper's senior author and member of the St. Jude Department of Developmental Neurology, "the findings have potential therapeutic relevance." Offering "insight into DIPG origins," "the lack of DIPG samples," and prompting "renewed discussion about the value of tumor biopsies upon diagnoses," the in-depth article can be accessed by clicking here.
In addition to helping fund the research, the study is an affirmation of Marc and Emily's (SFSF founders) decision to donate Sophie's tumor to St. Jude. Although the study does not, and would not, specifically identify the donor's names, it is more than possible that Sophie's tumor was among those used in conducting the above research.
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All I want for Christmas is an iPad2
The hottest selling item this Christmas is the iPad2, and SFSF has one to raffle off in time for Christmas giving. It is the 32GB with wifi capability, valued at $599.
The raffle tickets are $10.00 each and are on sale now. Only 100 tickets will be sold and the drawing will be held following the purchase of the 100th ticket. Contact Emily Quayle at emily@smilesforsophieforever.org to arrange purchase of a ticket. In addition, remaining tickets will be on sale at the Folger House Holiday Extravaganza on December 8 in Avon Lake. (See Holiday Extravaganza article).
The iPad2 was donated by Sarah Smith, Sophie's godmother and Emily's sister. Sarah won the iPad2 in a St. Jude Marathon contest (see St. Jude article) by securing the most on-line donations in one week's time. She kept to her Facebook promise and donated the iPad2 for more SFSF fundraising efforts. |
Riverview Community Schools Remember
For the fourth consecutive year, The Riverview Community School District, in Riverview, MI, has earmarked Smiles For Sophie Forever as the recipient of one of their C3 (Casual Clothes for A Cause) Days. This year's SFSF day was held on Friday, November 18. Each third Friday of the month, employees must "pay" a minimum of $5.00 for the privilege of dressing casually. This year's C3 collection totaled $879.62 for Smiles For Sophie Forever. In addition to the staff's C3 Day, many students and staff also sported the SFSF rainbow logo T-shirts. Susie Miklaski, who retired in 2007, but now serves as a substitute teacher in Riverview, was completing an 8-week position and had the opportunity to sell the shirts prior to the C3 Day. Over 75 shirts were sold from the sizes available.
At the beginning of each school year, employees are asked to nominate a charity for a C3 Day. The charities selected are based on the number of nominations received. With only nine potential Fridays throughout the year, the selected charities require continued support and numerous votes. Board secretary Susie Miklaski, who taught in the Riverview Schools for over 25 years, commented: "My former colleagues and students are so generous and so supportive. I am pleased to have worked with such a great group of people."
SFSF is ever grateful for the continued support of the Riverview Community Schools.
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Sporting SFSF shirts on the Nov. 18 Riverview Community Schools C3 Day are juniors Danielle Sclacht, Erin Usher, Alex Lucas, and Tyler Howarth. |
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Holiday Shopping Extravaganza
offers benefits to SFSF 
The Folger Home on Lake Road in Avon Lake will be the setting of the December 8 Holiday Shopping Extravaganza, with many local vendors selling their products; but more than that, Gold Gals will be on hand to trade old, broken, and unused gold for cash and spending money. The Gold Gals' 10% host proceeds will be donated to Smiles For Sophie Forever. Along with the profit-sharing endeavor, SFSF representatives will be on hand selling SFSF merchandise, including the 2011 SFSF commemorative Christmas ornament. Tickets for raffle baskets, as well as SFSF iPad2 raffle tickets can also be purchased. Tickets for the iPad2 raffle are $10.00 each; the drawing will be held when 100 tickets have been sold, hopefully in time for Christmas gift-giving. For a chance to do some serious Christmas shopping, buy SFSF merchandise, take a chance on a raffle basket, or buy an iPad2 raffle ticket, come to the Holiday Extravaganza, Tuesday, December 8, from 6-9pm at the lovely Folger Home, 32270 Lake Rd.
Sales consultants from Scentsy Wickless, Usborne Books, Thirty-One, Silpada Sterling Jewelry, Willow House, Tupperware, Personally Awesome, Mary Kaye Cosmetics, Emmy's Handmade, Meg's Cupboard, and Rodan+Field's Dermatologists will be among the many vendors touting their goods. |
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"When life gives you lemons, make lemonade"
Everyone knows it's hot chocolate weather, but SFSF can't forget about lemonade and the three lemonade stands set up by four little girls from Avon Lake, OH, and the one set up by a brother and sister team from Louisville, KY, all with their profits earmarked for SFSF. A special thank you goes to Abby Collins, sisters Emma and Sarah Van Euwen, and Jordan West, of Avon Lake and Hudson and Zetta Toler of Louisville, KY, for their generosity, selflessness, and dedicated work in the summer heat. While the Avon Lake girls had free-standing businesses, the brother-sister team took advantage of the traffic from their mom's (Lana) garage sale and offered water and cookies to their inventory. The profits from the four business ventures added over $100 to The Foundation's treasury. |
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Candlelighters brighten the holidays
Light Up the Holidays, the annual tree-lighting and decorating event, sponsored by Candlelighters, a non-profit organization dedicated to aiding families with victims of childhood cancer and raising awareness of childhood cancer, will be held, Dec. 4, at 6:30 pm in the Old Post Office Pavilion, in Washington, D.C.
The 23-foot tree, adorned with thousands of gold ribbons, bearing the names of children, stricken with cancer, are available for $5.00 each by visiting The Candlelighters website. The gold ribbon is the symbol of childhood cancer, and purchasing a ribbon entitled one to have a child's name inscribed on the ribbon.
The free-of-charge event also offers a variety of activities and entertainment for participants. Activities include magic shows and carnival games. Visitors are allowed and encouraged to speak at the event about the child being honored and/or remembered.This annual event is one that SFSF supporters should put on their bucket list. |
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WGAR Radiothon needs volunteers
Cleveland's WGAR is once again sponsoring its two-day, Country Cares for St. Jude Kids Radiothon to benefit St. Jude Children's Research Hospital and needs the help of many. Held at Great Northern Mall, December 8-9, from 6:00 am - 7:00 pm on both days, the event requires volunteers to answer phones and handle mailings. The schedule is organized into two-hour shifts, with a 15-minute training session prior to the start of each shift. Interested workers should contact Shirley Kremar by calling 330-764-3364 or emailing krcgolf@zoominternet.net. All volunteers will receive a free T-shirt from WGAR. Get into the spirit of Christmas by volunteering and making Christmas a little merrier for the kids at St. Jude. Volunteer today! |
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~~~ Sincerest Sympathies ~~~
to the family of Jackson Montgomery Moore, who passed away September 7, 2011. Jackson was the Spotlight child in the Fall issue of Smiles For the Season. With his Wii game and Toy Story videos, may Jackson enjoy forever his life above.
to the family of Juliana Silvernail, who passed away July 15, 2011, in Hialeah, Florida. SFSF was honored to have Juliana as its Spring Spotlight. May Juliana continue to sing and dance with The Lord.
 
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