Fall 2010                                                                                                               


Gone from the shelves of every store around are the jack-o-lanterns, ghosts, and scarecrows, only to be replaced by snowmen, Christmas trees, and colorful lights. Candy corn, now 90% off, makes way for, what else, but full-price, red and green candy corn! November is upon us, but wait, what happened to the Thanksgiving decorations? That poor holiday that should mean so much gets shuffled aside. And yet, there is so much to celebrate and to be thankful for!


As I run my training miles, dodging the scampering squirrels, I get to observe so much, and I also get to do some great thinking.  As I run, I like seeing the bales of hay, the colorful, hardy mums, the uncarved pumpkins and funny-looking gourds. They remind me of Thanksgiving. And there is so much to be thankful for! I am thankful that I am training for the St. Jude half marathon. Just last spring, my hopes of running the Cherry Blossom 10-mile were literally shattered by a broken ankle. For quite a while, I didn't think I'd walk again without assistance, then later walk without a limp, let alone run. Now I'm running again, and am I ever thankful. I'm thankful for my SFSF teammates who are running with me; I'm thankful for those who have donated to our fundraising efforts --- along with the $5000 from SFSF, we're nearly at the $10,000 mark, and we've almost a month to go; I'm thankful that SFSF is able to donate $5000 each year to St. Jude; I'm thankful for those who plan, sponsor, work, and attend our many fundraisers (Just read about them in this issue.) so that we can continue to help families, support St. Jude, and contribute to childhood brain cancer research. Thinking of all these things makes me grateful indeed.

Just yesterday, I was reading an article in the St. Jude Promise publication. I was amazed, happy, hopeful, and thankful for little Noah Shumate, who was diagnosed with a DIPG in December, 2008, and will be celebrating another Thanksgiving and Christmas this year. Yes, I am amazed by the success of the experimental treatment he's receiving at St. Jude, happy that DIPG patients are getting other options, hopeful that a cure will be found, and thankful that St. Jude exists. Yes, I am thankful for the care Sophie received at St. Jude, thankful for the dedicated medical personnel who treat all children like their own, thankful for the doctors who not only treat patients, but do painstaking research looking for a cure, thankful that Sophie's tumor was instrumental in the research conducted at St. Jude, thankful that SFSF supports viable cancer research and St. Jude, and thankful to be able to run in the St. Jude Half-Marathon. 


Oh, please don't take your pumpkins, scarecrows, and fall decorations down just yet. I like having things that remind me of fall, Thanksgiving, and why I have so much to be thankful for. 

I think I'll go for a run.

With love,

Sophie's Mommy/SFSF President


Courtney BurnetteDIPG Spotlight: Courtney Burnette

Meet Courtney Burnette, oh, but she can't be seen; she's in heaven, dressed in purple, her favorite color, the color of royalty, sitting with her King and Creator. As angels play their violins (Courtney's instrument), not harps, Courtney is patiently awaiting the arrival of her parents, Mike and LaNaye, and her siblings, Andrea, Megan, Lauren, and Ryan.

Little 9-year-old Courtney was diagnosed with DIPG, a diffuse intrinsic pontine glioma, in April, 2010, at Birmingham Children's Hospital in Alabama. Despite undergoing the prescribed six weeks of radiation and a chemo regimen of Temodar and Avastin, Courtney never experienced an extended proverbial "honeymoon" period, common for many DIPG patients, but she did enjoy some great summertime fun.

Throughout her treatment, Courtney never complained, even when her radiation mask became so tight, it caused a blister on her face. She was happy, happy whenever she had a good day, which wasn't as often as her parents had hoped.

A lover of animals, especially dogs and bunnies, Courtney enjoyed her time with Brewster, Cooper, and Dixie, the Hand-in-Paw dogs who visited her at the hospital.

Soon after her diagnosis, her dad bought her two rabbits, and not too long ago, in early October, the rabbits had babies. The comfort she received from her rabbits was special and when she couldn't have the real rabbits, The Velveteen Rabbit and its accompanying stuffed animal she received from her uncle Terry, aunt Linda, and Zach were welcome substitutes. It's easy to see why the zoo was one of her favorite places.

Courtney loved to read, especially the Adventures in Odyssey series and when reading became difficult because of her double vision, she loved listening to the CD's.

A little girl with great faith, Courtney loved her church services and was so excited about being able to attend church camp last summer.

Speaking of summer, Courtney enjoyed her "No More Radiation Party" on June 11, and was thrilled to have her backyard pool, installed as a surprise by her dad, grandpa, and uncles. Since Courtney had trouble walking, running, and riding her bike, the pool provided her with welcome summer fun in the sweltering Alabama heat.

Her MRI on July 8 indicated tumor shrinkage, and even though Courtney experienced a few setbacks, including a hospital stay, she was able to  travel with her family to Colorado for her Magic Moments trip, July 26-August 1. Courtney and her family visited Whit's End, the home of the Focus on the Family and The Adventures in Odyssey,  the Garden of the Gods, Flying W Ranch, the Air Force Academy, and Glen Eyre Castle. A special treat and highlight of the trip was being able to spend the night at Glen Eyre, a privilege usually only given to those 18 years or older.

Throughout her good times and bad times, Courtney and her family were surrounded by the love and support of family, friends, and faith.

Creating the "Lotsa Helping Hands" website, an idea of LaNaye's sister Cheryl, enabled friends and family to volunteer for meals and housekeeping duties, without having to "bother" Mike and LaNaye.

Friends and family were amazing, and continued with their support by publishing, -- an idea of Courtney's cousin, Susan --- and selling a fund-raising family cookbook and sponsoring a  benefit at the Sylan Springs Community Center, complete with gospel music and activities for the kids.

Her older sisters graciously and lovingly became Baby Brother Ryan's constant companions and care givers. Friends, aunts, uncles and grandparents often served as "Johnny-on-the-spot."
Courtney's pastor and congregation offered prayers and fasting on Courtney's behalf, and her anointing even showed some hopeful results. During September, Childhood Cancer Awareness month, a Prayer/Candlelight vigil was held  at North Highland  Baptist Church. Her mother's assurance to Courtney and her belief that Heaven is a beautiful place provided Courtney with a spirit of hope and peace.

Although many of Courtney's final days were spent in the hospital, it's very sure that on October 31, 2010, Courtney was lifted up to Heaven, and became surrounded by her favorite animals, sunflowers, butterflies, violin music, and a myriad of miniatures, which she generously  shared with all her new-found friends. Caroline, her pen pal and friend must hear all about this!

Courtney's legacy lives on, now only through her family, but through her You Tube feature on cancer awareness and her Focus on the Family promo.

Read Mike and LaNaye's entire journal at http://www.caringbridge.org/visit/courtneyburnette.

best of west article"Thanksgiving, after all, is a word of action."

~ W.J. Cameron

Erin LoschetterThird-time "Locks of Love" donor supports SFSF

Erin Loschetter of Avon Lake, OH, grows her hair, only to donate it to Locks of Love, an organization that provides hairpieces to financially-disadvantaged children. Erin donated her hair in 2003 and in 2006. This time around she decided to incorporate fundraising into her "growing time." Erin's goal is to raise $1000, and then cut her hair. Her effort, which she fondly names, "A Cut for Cancer Charities," will aid two charities:  the outreach ministries of Avon United Methodist Church in Avon and Smiles For Sophie Forever in Avon Lake. Erin has already donated $175 to SFSF, and hopes to soon meet her SFSF goal. Anyone wishing to donate may make checks payable to either Avon United Methodist Church or Smiles For Sophie Forever. Address inquiries to Erin at busybee818@yahoo.com. SFSF appreciates Erin's dedication to her individual mission.
Sophie's legacy lives on  
sophie's school photo
On the third anniversary of Sophie's passing, October 6, 2010 Board President Emily Quayle shared two videos on Facebook: Sophie, before her cancer diagnosis and Sophie, after her cancer diagnosis. Since so many SFSF followers and Facebook fans had commented on them, the links to the two videos have been included below. Thanks for commenting, sharing Sophie's story, and following SFSF. The videos were produced, free of charge, by a friend of the Quayles, who created them for Emily and Marc's presentation at the Cleveland Clinic.
SFSF featured in ParentsPower of Parents - Nov.10

Thanks to SFSF Board member Laurann Collins, who serves on the publicity committee, for nominating SFSF for Parents magazine's "Power of Parents" feature. A thumbnail sketch of SFSF, along with a picture of Sophie and her mom, Emily Quayle, appeared in the November, 2010 issue. Organizations which are featured in the column are eligible for cash donations from Parents.
Who we've helped

Since August 1, 2010, the Foundation has helped 29 families and awarded $24,835 in grant money, bringing the total amount of family grants awarded to $116,135. The grand total donated by SFSF, including donations to The Cure Starts Now ($22,000) and St. Jude ($15,000), is $153,135.

Every month, the SFSF Grant Committee approves applications for financial assistance for families of children with brain cancer. Grants are awarded in the amount of $1000 and renewable twice for an additional $500 each. The children of the families who received grants in August, September, and October are:
  • Sydney, age 9 - lower brainstem/upper cervical cord tumor
  • Dewon, age 4 - PNET
  • Ashani, age 5 - passed away September 2010, DIPG
  • Jackson, age 6 - DIPG
  • Anonymous, age 10 - medulloblastoma
  • Marissa, age 13 - medulloblastoma
  • Corey, age 4 - PNET
  • Anonymous, age 7 - ganglioglioma
  • Anonymous, age 13 - right temporal brain lesion
  • Diamond, age 6 - astrocytoma 
  • James, age 12 - optical pathway glioma
  • Breanna, age 7 - optical pathway glioma
  • Emily, age 8 - DIPG
  • Samson, age 14 - oligodendroglioma
  • Espn, age 2 - DIPG
  • Justin, age 15 - medulloblastoma
  • Corey, age 14 - passed away July 2010, grade IV glioblastoma
  • Bryon, age 4 - optic glioma
  • Matthew, age 11 - ganglioglioma
  • Steven, age 3 - medulloblastoma
  • Bishop, age 10 - ganglioglioma
  • Anonymous, age 13 - pontine glioma
  • Anonymous, age 2  - anaplastic astrocytoma
  • Destinee, age 5 - atypical teratoid/rhabdoid tumor (ATRT)
  • Anthony, age 6 - passed away August 2010, medulloblastoma
  • Candace, age 6 - DIPG
  • Dillon, age 12 - pilocytic astrocytoma
  • Sarah, age 9 - optic glioma
  • Octavio, age 6 - 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.

    "As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them."

    ~ John Fitzgerald Kennedy


    The above picture and caption appeared in The Sun Sentinel on Oct 14, picture-proof that the Kiwanis Club works at fulfilling its charitable mission.
    Mackenzie GroveMackenzie makes, gets
    her birthday wish

    What kind of birthday party appeals to most 7-year-old girls? A princess party?  A pony party?  A pampering party?  A pajama party? Any of those might work, as long as they are accompanied by presents, right?   Not for Mackenzie Grove! Mackenzie, daughter of Jeff and Katy Grove, co-treasurers of SFSF, chose to have a pool party, minus the presents.
    Mackenzie who turned 7 on June 18 decided to wait until mid-summer to celebrate her birthday with friends; besides expecting that the weather would be warmer, July also coincided with the opening of the new pool in Avon Lake, OH, and also fit her softball schedule and her brother Danny's baseball schedule. After all, their Dad coached both teams, and missing games and practices was not on his schedule.
    Back in March, with the hype about the new pool opening in Avon Lake, Mackenzie was sure she wanted a pool party. With many pre-planning discussions, Katy began asking Mackenzie what gifts should would like for her birthday, as she knew that mothers of her friends would be asking. Mackenzie suggested that maybe she could donate her gifts of money to the SFSF Birthday Bash & Dash held on the Fourth of July. Although discussed, the idea wasn't mentioned again.  As time for sending the invitations neared, Mackenzie's grandmother commented on Mackenzie's decision to donate her gifts to "Sophie" to give to families who needed help. Obviously, Mackenzie never wavered on her decision. It was a done deal. Katy included Mackenzie's wish on the invitations; a generous $335 given as "Mackenzie's birthday presents" from the 20 party-goers was collected. Mackenzie just couldn't wait to hand-deliver her birthday gift to Sophie's mom. No mention of missing birthday presents ever came from Mackenzie. She was happy enough "to take it (the money) to Sophie's house so she could give it to Mrs. Quayle and play with Sarah (Sophie's little sister)."
    Mackenzie and Sophie were classmates in the Fish Room at Little Learners pre-school back in 2006 and Mackenzie knew Sophie quite well. Although the two never finished the year together, it's obvious that Mackenzie never forgot her little friend Sophie.
    Smiles For Sophie Forever appreciates Mackenzie's donation and is touched by the giving spirit of little 7-year-old Mackenzie. Not only "out of the mouths of babes," but out of the actions of babes.
    Candlelighters brighten the holidaysCandlelighters tree ribbon logo 
    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. 11, 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 now available for $5.00 each by visiting www.candlelighters.org or by clicking the gold ribbon above. The gold ribbon is the symbol of childhood cancer, and purchasing a ribbon entitles 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 year's special attraction will be an appearance and performance by Abby Miller, a 13-year-old singer, who was instrumental in securing a $250,000 grant to Arms Wide Open Childhood Cancer Foundation from the Pepsi Refresh Project.
    Abby posted four videos on You Tube in the final two weeks of the contest in which she sits beside Taylor Love, describing Taylor's battle with two forms of cancer --- neuroblastoma and leukemia, which was caused by the subsequent chemo and radiation treatments administered for the neuroblastoma. Abby sings Taylor's favorite songs as candid photos of Taylor undergoing treatment scroll across the screen.
    Although a trip to DC for the event may not be possible, remembering a child stricken by cancer by purchasing a gold ribbon is.

    "Praise God even when you don't best of west articleunderstand what He is doing."

    ~ Henry Jacobsen

    On the run, headed south

    For the third consecutive year, a SFSF team will travel to Memphis, TN, December 3-5, for the St. Jude Marathon Weekend. Veteran participants are SFSF President Emily Quayle (third year) and SFSF Board secretary Susie Miklaski (second year). Kristin Van Euwen, former SFSF Board member and 2-year SFSF race director and Leslie Farmer, Sophie's aunt and avid SFSF supporter are first year participants.

    Emily and Kristin registered for the half marathon and Susie and Leslie are registered for the 5K. The entire team has registered as St. Jude heroes, pledging to raise at least $500 each. Adding to the team's fundraising efforts is the $5000 donation from SFSF, keeping with its mission of supporting St. Jude, where Sophie was treated.
    To date, the four have raised an additional $4245, bringing their team total to $9245.

    Anyone wishing to donate may send checks, payable to St. Jude to Emily Quayle, 31722 Leeward Ct., Avon Lake, OH 44012 or may donate online.
    St. Jude Heroes
    SFSF Charity Bazaar features holiday gifts

    For the first time ever, SFSF sponsored "Sophie's Attic," a fall charity bazaar, at Holy Spirit Church hall in Avon Lake, Saturday, Nov. 6. The event featured over 20 crafters, vendors, and re-sellers, offering, among many items, wreaths, jewelry, headbands, scented candles, and purses ---- all delights for the ladies.

    Tables in a 10'x10' space were available for $30. Participants had the opportunity to showcase their wares and earn extra Christmas money.  Shoppers "got a jump" on purchasing unique gifts, while entering drawings for items given away throughout the day. Early-bird shoppers could buy bagels and coffee; pizza and pop were available in the afternoon. Smiles For Sophie Forever merchandise was also available. The 2010 SFSF commemorative Christmas ornament made its official debut. (See related article.) Profits from the Bazaar were not available at press time.
    SFSF thanks all participants and shoppers for their continued support and wishes all stress-free, happy holiday shopping.
    In This Issue
    DIPG Spotlight
    "Locks of Love" donor supports SFSF
    Sophie's legacy lives on
    SFSF featured in Parents
    Who we've helped
    Mackenzie's birthday wish
    Candlelighters brighten the holidays
    SFSF Team to run St. Jude Marathon
    SFSF Charity Bazaar
    Encana sponsors Chili Cook Off
    Brain tumor victims offered Help
    Meaningful wedding table favors
    Fundraiser for Team SFSF
    St. Jude Thanks and Giving
    SFSF Christmas ornament
    Don Frank Salon fundraiser
    Silpada Designs Jewelry fundraiser
    Thirty-One Gifts fundraiser
    Encana sponsors Chili Cook Off
    chili cook off

    Charly Miklaski, Sophie's uncle and godfather, and his "firemen" team from Encana entered the 4th annual Encana Cares Chili Cook Off, held Thursday, October 21, at the Crown Plaza in Dallas, naming SFSF as the charity of its choice. The free-admission, free-buffet, free-prizes event featured Encana teams, all vying for top prizes, ranging from $500 - $1000 for their favorite charities.
    Seems as though the Firemen Team, aka, SFSF Team, made its chili a little too flaming for some, and not enough for others. Although the team did not win, they donated their entry prize award of $100 to SFSF and had a roarin' good time.
    Encana is known for its charity programs, and matches employees' donations to their favorite charities. Charly and his team vowed to work on their recipe for next year.
     best of west article
    Brain tumor victims offered help 

    The American Brain Tumor Association funds brain tumor research and offers services to patients and family members in the U.S. and throughout the world.  To learn more about ABTA and its mission, visit www.abta.org

    To learn more about the resources offered, please contact an ABTA social worker at 800-886-2282, or send an e-mail to socialwork@abta.org

    Visit the ABTA Care and Support web page to read the latest edition of "The Caring Column," a monthly column designed to answer questions from patients and family members.

    Looking for a meaningful wedding table favor?

    Christmas bells sometimes give way to wedding bells. If a wedding is in your future, consider making a donation to SFSF, explaining your charitable gift to your guests. In lieu of chocolates, tea lights, or even plastic swans, let SFSF create a personalized bookmark to serve as your table favor. The bookmark will not only be a permanent keepsake of your wedding, but will also serve to remind your guests of your marriage commitment of "loving and sharing and giving and caring."  Bookmarks may be color-coordinated with the wedding colors or in rainbow colors to match Sophie's rainbow. See sample below. Suggested donation is $2.50 per bookmark to cover cost of cardstock, ribbons, printing, and laminating. Contact susie@smilesforsophieforever.org  for further info. Orders must be placed at least four months prior to the event.
    wedding table favors
    Fundraisers help Team Smiles For Sophie Forever

    Team Smiles For Sophie Forever is not only relying on individual donations to meet its $13,000 goal for the St. Jude Marathon Weekend event. Team members Emily Quayle and Kristin Van Euwen hosted a euchre tournament at the Quayle's home, Saturday, Oct. 30. Half of the $20.00 per person entry fee was given to the top three point-getters, and the other half was earmarked for Team SFSF. The 14 players enjoyed a night of fun and friendly competition; the team not only gained $120, but the winnings of the Booby prize winner, another $14 in euchre fines, was also donated back to the cause.

    Riverview High School, in Riverview, MI, where Susie Miklaski taught English for many years sponsored two separate fundraisers. Members of the Student Council, under the leadership of Penny Eshleman, had a one-day donation drive, collecting $100 from the student body. The EGAD (Everybody Gives A Darn) Club, directed by Alicia Pearce, sold Halloween Spook-o-grams. EGAD donated half of its profits, $135, to Team SFSF.
    The SFSF Team appreciates the efforts of all participants, donors, and fundraising organizers.

    st jude marathon logo
       How can YOU help?

    Thanks and Giving logo

    Look for the Thanks and Giving magnifying glass logo wherever you shop this holiday season to support the children of St. Jude. To learn more about the Thanks and Giving campaign, visit www.stjude.org. There you will find a complete list of Thanks and Giving partners, with details about where to shop and how to donate.
    SFSF commemorates Christmas season with Rainbow Snowman

    A three and one-half inch hand-painted iridescent Mercury glass snowman, bedecked in a rainbow top hat and single-colored scarf is the 2010 Smiles For Sophie Forever commemorative Christmas ornament. The snowman hangs on a "2010 Smiles For Sophie Forever" imprinted ribbon and is now available for $10. A limited number is available. Local orders, to be picked up, can be placed by contacting Andrea Bucci at
    Mail orders, which require additional postage, may be made online in the Smiles for Sophie Forever Gift Store. For those who are collectors, some 2009 SFSF ornaments are also available in the gift store.
    SFSF Ornaments

    rainbow image


    SFSF reaps rewards from Don Frank Fundraiser
    Don Frank Salon


    Don Frank Salon put the final touches on Childhood Cancer Awareness Month by holding a fundraiser on September 30 at its salon in Vermilion. Fittingly called Smiles For Sophie Day, the salon was turned into an affair that did SFSF proud. All employees wore a different color of the rainbow in honor of Sophie's rainbow; rainbow-colored cupcakes were offered to clients; SFSF brochures and bracelets were on display; and the profits of the day, over $350, were donated to SFSF. Consultants from Silpada Jewelry and Thirty-One Gifts were invited to "set up shop" within the salon, with a percentage of their profits earmarked for SFSF.

    Stylist Lindsay Geary, knows the Quayle family, and cut little Sophie's hair.  "Sophie was such a little princess that loved to be pampered....  After watching an innocent child like Sophie go through what she did... I would always do what I could to put an end to this awful disease."  Sophie's mom, Emily, and her sister, Sarah, are also Lindsay's clients. For Lindsay, who also watched her grandfather pass away from cancer, "working the fundraiser was a labor of love."

    The event, which Lindsay hopes to hold yearly, provided both beauty and bounty, and SFSF is so grateful.

    Amy Cashman raises cash for SFSF Foundation
    Amy Cashman, an independent representative for Silpada Designs Jewelry, was "touched" by the story of Faith Pruden, a seven-year-old Ohio girl, who battled a brain stem glioma, but lost her valiant fight on August 7, 2010. While following Faith's story in her mom's on-line journal, Amy "came across other incredible stories of bravery, hope, and faith," among them Sophie's, on Smiles For Sophie Forever. Wanting desperately to help, Amy is offering 50% of the proceeds of Silpada Jewelry sales, ordered through her, to Smiles For Sophie Forever. Anyone who schedules a catalog or home show through Amy will also be helping Smiles For Sophie Forever, plus be earning some jewelry for herself. See the jewelry catalog by visiting www.silpada.com. Contact Amy, on that site, by clicking on the "Contact Silpada," box and typing "Amy," "Cashman," and "Ohio" in the appropriate boxes or email Amy at amycashman@insight.rr.com and she will send the link.

    Thirty-One Gifts consultant shares with SFSF
    thirty-one gifts
    Pat Bolt, a Thirty-One Gifts consultant, has graciously offered to donate $1.00 for every order she receives during the months of October and November to SFSF. Thirty-One Gifts, which specializes in purses, bags, and totes, is unique because most of its products can be personalized. And nothing beats a "personalized" gift!  In October, Pat obtained 79 orders that was $79.00 for SFSF. And for most, Christmas shopping has not yet begun in earnest.

    Pat offers both in-home and catalog "parties." The many items available, for sale, plus hostess gifts, can be viewed at www.mythirtyone.com/pbolt. As a retired teacher, Pat was "looking for something to do." SFSF thinks helping raise funds to fulfill its mission is a great thing for Pat to do.
    Pat learned about SFSF after taking part in Don Frank Salon's fundraiser (see related article) held September 30 in Vermilion, OH.  As a retired teacher and mother, children hold a very special place in her heart.
    "I cannot begin to understand the pain you and your family went through. I hope that the Foundation's efforts are helping other families that are dealing with this rare cancer," said Pat to SFSF president Emily Quayle.
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