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Emily's Intro...
Dear Smiles For Sophie Forever Supporters,
It doesn't seem right to be sending out a spring newsletter when we have snow on the ground in Ohio, but since the calendar says it is spring, we can't deny that it is here!
I am always glad when February is over. Since Sophie's diagnosis in February of 2007, it has become my least favorite month and the hardest to get through. I still struggle to find the words to write to express what that year was like for us. I glanced back at a blog entry that I wrote on March 29, 2007. It is hard to relive those tough, tough days with Sophie. Often people have questioned why I don't write on the blog anymore. And to say that I don't have time is a sad excuse because if there was ever a time that I didn't have "spare" time it was in 2007, yet I was writing on the blog almost daily. Honestly I slowed down the blog entries after Sophie's death and the creation of The Foundation because I could rarely think of anything positive to say. During Sophie's illness, I didn't write on the blog for therapy, but just as a way to keep friends and family informed, and once Sophie died, and we established The Foundation and set up the SFSF website, there wasn't a whole lot to say that wasn't said elsewhere. Even though I usually have a hard time each quarter when my Mom tells me it is time to write an introduction, I appreciate the opportunity to write to you, my family, friends and supporters.
It has been seven years since Sophie's diagnosis and six and a half years since she died. Sophie would be turning 11 years old this July, and we miss her as much as we ever have. I wonder every day what she would look like and sound like, and I long to be able to hug her in my arms. I wonder how our life would be different and how Sarah would like having an older sister. I wonder so many things. Shortly after Sophie was born my sister gave me a vase that has an inscription on it that reads, "I always wanted to invent something that would move and make strange noises and change the world as we know it. And now that I have kids, I see I came pretty close." I never would have dreamed how true that inscription would ring. I will never get to see Sophie grow up and "become" something, but what she accomplished in her four short years and the legacy she has left behind sure makes a Mom proud. But much of this lasting legacy was made possible by you.
Because of your support, we are quickly approaching the $500,000 mark of funds that have been granted to meet the mission of SFSF. Half a million dollars in six years! Sometimes I can't even believe it. We have so many dedicated people that help The Foundation run, and I am so thankful for them. The Foundation could not function without this help or without the generous financial support of all our donors. I can look back at my blog writings of 2007/2008 and feel sad, or I can read through parts of this newsletter and feel really proud and hopeful. I hope you will take the time to read along too, to see what we have been up to, how you can help us move forward, and also be inspired to pray for the kids and families who fight this beast called brain cancer.
With hope and gratitude,
Emily Quayle
SFSF Board President
Sophie, Sarah, and Marie's Mommy
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Spotlight: Nathan Thomas

This issue's spotlight is on six-year-old Nathan Thomas, a 3-time SFSF grant recipient whose story is beautifully told and progress updated on FB's "Please Pray for Nathan Thomas" by his mother, Beth Wood Lockhart. In her words and latest update posted in February, 2014:
It is Nathan's 4-year "Tumorversary." Just after Valentine's 2010, Nathan had his first MRI at Vanderbilt Children's after a L hand tremor and a change in gait. We were told that day that our 2 year old son had a mass measuring 7.8cm x 4.5cm with a huge cyst laying in his third ventricle, hypothalamus region, pressing on his optic nerve and growing down toward his brain stem. He was immediately admitted to PICU and 5 days later he had a 12 hour craniotomy that removed 99% of it. Ten weeks later, it was back with a vengeance. Pathology came back as a DIG, Desmoplastic Infantile Ganglioglioma, a very rare but low grade, non-metastatic type of tumor with excellent prognosis, though Vanderbilt had zero experience treating this type of tumor. It is just not one that walks in the door every day, they had seen one other case. Nathan's father had been dx with cancer 14 weeks previous and was already on aggressive chemo after a radical surgery. Mike lost his life to cancer in December 2011.
We spent the first 6 months at Vanderbilt and started chemo Memorial Day weekend 2010. Ten weeks of Carboplatin and Vincristine and it grew. I had found a doctor at Duke who had treated a few children with this and they were alive so we left for NC packed for a 6 week stay. Six weeks turned into 30 months.
Nathan has had 12 surgeries including 2 craniotomies, 6 shunt revisions, MRSA & port placements. He has learned to walk 3 times in his short life. We have been through 2 failed clinical trials including the brain tumor vaccines and have wandered the corridors of 5 hospitals, Vandy, Duke, Pittsburgh, Kosair's and MD Anderson and have 4 additional hospitals - Dana Farber, Sloan Kettering, Stanford and CHOP reviewing scans quarterly. Nathan has had at least 35 MRI scans, dozens of CT scans and X-rays. Countless days inpatient, hundreds of hours of rehab therapies, 5 moves, more sticks, pokes, port accesses than I can count, a trillion miles on the road, more bad news than good. More fear, tears, despair, sleep deprivation and bodily fluids than I knew was humanly possible.
Nathan has had these chemo drugs - Carbo, Vincristine x 2, Cisplatin, VP16 x 2, Cytoxan, Avastin, Vinblastin, Revlimid and Temodar. He has been stable since May 2013 on Temodar and VP16 (Etoposide). Nathan has never gone into remission and his benign, non malignant, primary tumor blew everyone's mind in June 2012 when it went malignant and the MRI showed 8 lesions in his brain and 4 in his spinal cord. The spinal lesions are gone at present and the other 7 lesions are mm sized and have remained stable since found.
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If we had no winter, the spring would not be so pleasant: if we did not sometimes taste of adversity, prosperity would not be so welcome.
~ Anne Bradstreet
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Riverview Community Schools dress down for SFSF
 | RCHS Staff Members: Kevin Riley, Michon Lince, Aaron Robinson, Susie Miklaski, Jen Barczyk, Dawn Miclea, Kristin Weber, Laura Kremkus, Jan Gottlin |
Even though the day before Christmas vacation usually has fewer students in attendance, and for those who do attend, it's a day to wear red and green or an "ugly" Christmas sweater, the students and staff who came to the Riverview schools that day contributed $814.80 to SFSF through their C3 campaign. What's more, many were clad in SFSF rainbow T-shirts. This was an excellent showing for the last half-day of 2013. Over the past five consecutive years, Riverview schools have donated $3,911.83 to SFSF, through their C3 program.
In Riverview, the traditional C3 (Casual Clothes for a Cause) Day, is the third Friday of the month, and a day when the eight, staff-nominated charities benefit from donations made by students and staff, for the sole-privilege of dressing casually.
Riverview Community Schools, where Board Secretary and Sophie's Grandmother Susie Miklaski taught for over 25 years, has continually supported and sponsored many SFSF events and fundraisers. And for their undying efforts, SFSF, once again, says, "Thanks so much!"
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St. Jude Marathoner shares her heartwarming
and inspirational account
 | First time marathoner Nina Stanossek |
(Editor's Note: When the December 7, 2014, St. Jude Marathon was cancelled due to an ice storm in Memphis, the 21-strong SFSF St. Jude Marathon team found ways to run their committed races, not just for their donors, but for St. Jude, and themselves. Below is Nina Stanossek's account of "her race.")
I DID IT!! Whatever your passion, whatever your goal, it CAN be reached!! After my marathon dream in Memphis was shattered when St. Jude CEO Rick Shadyac cancelled the race for safety issues, I learned quickly to turn a negative into a positive. I realized all the patients at St. Jude cannot run a marathon, but I can run anytime I want. I transferred my registration to the New Orleans Marathon - Feb. 2, 2014, thanks to the offers from St. Jude. I tried to get some other Smiles for Sophie teammates to join me (Jen/Leslie/Elizabeth!), but I had no takers. I was doing this solo! Three weeks before the marathon, while doing my 20-mile run indoor at the Petit Ice Center in Milwaukee, I tried to keep pace with a 63-year-old woman who was passing me. As I started a conversation, she told me that she ran her very first marathon when she was 50! That was exactly my goal! She told me about her approximately 70, half marathons that she has run since then, and her dream-shattered Boston marathon when the bombings went off, and she had to stop a half mile before the finish line. After I finished my 20 miles, I realized I CAN DO THIS!!
I had never been to New Orleans before and had no idea what a FUN and LIVELY town it was! My two sisters, girlfriend and husband came along to cheer me on. We partook in the bars, food, impromptu parades, bicycle tour of town and the St. Jude Hero's dinner. It was a little hard the second night to not partake in any Hurricane drinks, as we were all in bed by 10 p.m. I said a little prayer that night to help get me through the marathon. The next morning, as we headed out to the start line, I was nervous, excited and all by myself. It was a cool misty day but I was excited to see 26.2 miles of the city. The first 5 miles, the only thing I could think about was where can I go to the bathroom as the lines were too long at the port-a-pottys. Miles 6 and 7 my sisters, friend and husband were there with their bright orange shirts. I could spot them a mile away! Before I knew it, I was at mile 10. Now came the dividing point - half marathoners to the right and full marathon to the left. All of a sudden I didn't know my right from my left :-)! The guy behind me said, "Your race is just beginning." Quitting was never an option for me. I got to mile 14 and they had Krispy Kreme donuts and oranges! Seriously! Well....I couldn't resist the temptation and I can't believe I ate a Krispy Kreme donut during a marathon!! Just then the elite runners were coming through on the other side of the boulevard and one guy had a long beard. I said to the girl next to me, "He doesn't look like a marathon runner." She said, "Well, I probably don't either, but this is my 59th marathon!" She was 54 years old! She then proceeded to tell me that she trains first time marathon runners. I held my hand up for a high five and said, "That's ME. I prayed for you last night! This is my first marathon and you are my guardian angel." We talked all the way from mile 14 to the finish! One mile at a time. Everything from focusing on a landmark, the money raised for St. Jude and other organizations, religion, family and my cheering section coming all this way for me, to the positive things in my life. The last mile she told me to dedicate it to someone special in my life! And then there was the FINISH LINE! I finished strong with a smile on my face. "I JUST RAN A MARATHON!!" The excitement was overwhelming. It was the most unbelievable feeling to accomplish that goal and cross that finish line. It can be done. I finished way ahead of my 5 hour time goal and finished at 4:27, a 10:13 minute mile pace. The strong words and encouragement of my newly found friend, Kathleen, will never be forgotten. Also, my 63-year-old friend contacted me right after my race and told me that her very first marathon at 50 she finished at 4:27 also!! I always said, "One and done," but I need to accomplish the goal I first set (thanks Jen) and that is to finish the St. Jude Memphis marathon and that is next on my bucket list. Hope to see you all there in December!
(Editor's conclusion: Not only the 21-member team, but hopefully many others will join Team SFSF in December, 2014.)
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Liberty Elementary promotes a freedom,
"freedom from pediatric brain cancer"
 | Marie and Sarah Quayle sporting a few of the loom bracelets from Liberty Elementary. |
Liberty Elementary School in North Ridgeville, Ohio, has done it again --- sponsored a fundraiser for SFSF, donating $742 from its February Rainbow Loom Sale. Under the direction of Heather Kama-Starr and the Liberty Student Council, Liberty students were asked to make rainbow loom rings, bracelets, and necklaces, and then donate them to the three-day school sale.
All items were due to Mrs. Heather Kama-Starr on Valentine's Day, a perfect day for giving work from the heart. The items sold for $.50, $1.00, and $1.50. For a $742 donation, that was a lot of hand-made loom jewelry, made, donated, and sold. It appears that the popularity of making and wearing the mini-rubber-band-loom jewelry in still in vogue among the elementary students. SFSF also likes to believe it's the cause which motivated the sales.
Liberty Elementary is no stranger to SFSF; in October, 2012, the students donated the profits ($500) of their annual pumpkin decorating contest and silent auction to SFSF. Actually Mrs. Kama-Starr is no stranger to the Quayle family; Heather worked with Marc in Emily's dorm at Eastern Michigan University a while back. When Heather and Marc accidentally met up in the summer of 2012, and Heather became aware of Sophie's story, planning SFSF fundraisers was just an automatic gesture.
SFSF thanks the Liberty school Student Council, Liberty students, and Mrs. Kama-Starr for their hard work and generosity.
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Spring is nature's way of saying,
"Let's party!"
~ Robin Williams
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A Favorite Pastime --- Shopping --- benefits SFSF
Amazon.com has recently given permission to the 501C3 charities registered with AmazonSmile to publish the following information in their newsletters, web sites, and Facebook Pages. Amazon.com shoppers simply need to access SFSF's web code to begin shopping at AmazonSmile; in return The AmazonSmile Foundation will donate 0.5% of the purchase price for eligible Amazon Smiles purchases to SFSF. Certain items are not eligible and will not result in donations. Since registering in October, 2013, AmazonSmile has given $23.13 to SFSF. However, with permission to advertise the program, SFSF supporters and shoppers have no reason "not to know" how beneficial on-line shopping at AmazonSmile can be for SFSF. Furthermore, from now through 3/31/2014, the AmazonSmile Foundation will donate an extra $5 for each customer who makes an eligible purchase in support of Smiles For Sophie Forever. This is in addition to the regular donation of 0.5% of the purchase price. Up to $1,000,000 extra will be donated to eligible charities as a result of this promotion.
SFSF continues to benefit from iGive. Many on-line stores (check the alphabetical list) which are connected to the iGive program will give a certain percentage to SFSF. Participating on-line stores are listed on the iGive.com website. By accessing the iGive site with SFSF as the designated charity, buyers automatically will be donating the site's percentage of sales to SFSF. From April, 2009 to Feb. 28, 2014, iGive has given SFSF $432.33.
For those shoppers who need to see and touch their purchases, especially all those spring, get-your-yard- ready-for-summer purchases, remember The Rock Pile in Avon, 900 Nagel Road, will donate 5% of the pre-tax purchase to SFSF; buyers need only to mention SFSF at checkout. This independent garden center carries a unique variety of decorative, outdoor items, bird-feeders and bird feed, as well as necessary landscaping supplies.
The above offers cost the buyer nothing; do not require any additional purchases, and are pain-free.
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Just over three months until The Bash & Dash

Plans for the Seventh (yes, seventh) Annual SFSF Bash & Dash are on the drawing board! The date, as in the past six years, is July 4th, the would-be, should-be eleventh birthday of precious Sophie Quayle. Her birthday celebration continues here on earth as over 1000 adults, teens, children, and toddlers gather annually in Walker Road Park for The Bash (games, food, raffles, prizes, and pre-4th of July partying) and The Dash (1.5-mile walk, 5K run, 50-yd dashes.)
SFSF President Emily Quayle, nervously claims, "It's a little more than three months away, and there is much to be done. Our top-notch priority is securing our corporate sponsors and gift-in-kind donors, although that's just preliminary. The list of to-do's seems endless, and SFSF denies no one the opportunity to help out!"
Interested volunteers and SFSF supporters may contact Emily at 513-260-0917, or via email for additional information.
Registration for the dash and race details will be available by April 1 on the SFSF website. Of utmost importance for all race registrants is to begin planning fundraising campaigns, as it's the fundraising registrants who add tremendously to the success of The Bash & Dash, the "main event" for SFSF.
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SFSF grants surpass $435,000
Since December 1, 2013, the Foundation has helped 16 families and awarded $16,000 in grant money, bringing the total amount of family grants awarded to $330,553. The grand total donated by SFSF, including donations to The Cure Starts Now ($57,000) and St. Jude
($50,000), is $437,553.
Since January, 2014, the grant process allows families to apply for up to a $1,000 grant twice a year instead of just once per year. The application instruction sheet and the application itself can be found on the SFSF website. For any questions regarding the grant process, please contact Shawn Green, the SFSF Grant Committee Chairperson.
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 December 2013 and January and February 2014 are:
* Christopher, age 16 - DIPG * Nathan, age 1 - ependymoma * Haylee, age 3 - ATRT * Catherine, age 18 - grade IV gliobastoma * Noah, age 14 - oligodendroglioma * Anonymous, age 3 - choroid plexus carcinoma * William, age 2 - DIPG * Eric, age 18 - medulloblastoma * Emily, age 1 - optical pathway glioma * Asiana, age 10 - grade IV glioblastoma multiforme * Anonymous, age 3 - DIPG * Clifford, age 11 - astrocytoma * Anonymous, age 13 - anaplastic ependymoma * Nathan, age 6 - desmoplastic infantile ganglioglioma * Nolan, age 18 - glioblastoma * Kaydyn, age 6 - pilomyxoid astrocytoma
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Smiles abound for Sixth Annual
SFSF Appeal
Spring brings sunshine (hopefully) and many smiles for the Sixth Annual SFSF Appeal. Featuring the "smile" of Smiles For Sophie Forever, the appeal will soon be arriving in the mailboxes of the 2700+ SFSF supporters.
Explaining the story of the "smile," in The Foundation's name, embodied in the SFSF rainbow, the appeal is sure to bring many smiles to and for SFSF supporters. SFSF hopes that the information enclosed in the appeal will encourage many smiles, along with many generous donations.
To date the Appeal has provided SFSF with $48,367, enabling The Foundation to help families with children diagnosed with pediatric brain cancer, to support cancer research, and to support St. Jude where Sophie was treated. However, "All the statistics in the world can't measure the warmth of a smile," claims Chris Hart.
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Women in Construction donate to SFSF
 | Front: Maria Mrosek; Back: Debbie Mazola, Mardi Gauer, Monica Bruaw |
The Cleveland Chapter of National Association of Women in Construction (NAWIC) donated $482 to SFSF, representing shared profits of the Chinese auction held at The Tenth Annual Joint Associations Holiday Social, Dec. 5, 2013, at Embassy Suites Hotel in Independence, OH. Each year, the Cleveland Chapter hosts the holiday affair joining with ten other associations from the construction field to share dinner, ideas, entertainment, and fundraising efforts.
NAWIC is composed of women working in the construction and related industries, providing networking opportunities, education certifications, seminars, workshops, and educational research to its members. Besides planning the Holiday Social for the past ten years, the Cleveland Chapter hosts the annual Block Kids Building Program competition and Magic (Mentoring a Girl in Construction) Camp, where girls learn to use tools related to construction fields. The Chapter has also awarded over $40,000 in scholarships to junior or senior level college students who plan to pursue a construction-related career at a Northeast Ohio College.
Monica Bruaw, regional project coordinator manager of The Cleveland Chapter of NAWIC, attends Fit Me Up with Marc and Emily Quayle. It was at Fit Me Up that Monica was introduced to SFSF in the spring of 2013. She and her husband Cory participated in last year's Bash and Dash and she was instrumental in having SFSF named as one of the benefactors of the fundraiser.
SFSF thanks Women in Construction, the joint associations, the raffle-ticket buyers, and Monica for supporting SFSF with their generous donation.
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Time to think of GOLF...
With the hope that March will go out like a lamb and that warm weather is on the horizon, SFSF happily announces its two, early June golf outings.
The Third Annual SFSF Ohio Golf Outing will be held Saturday, June 7, at Sweetbriar Golf Club (Legacy 18) in Avon Lake. Shotgun start is 1 pm. Offering two distinct landscapes; a windy fairway with large greens, on the front nine, and a wooded setting, with a traditional East Coast feel on the back nine, Sweetbriar provides landscapes for different tastes. The event, which includes 18 holes, a cart, lunch, dinner, awards, beverages and afterglow is $125 per golfer ($500, a foursome).
New this year is the opportunity for golf widows and 19th-hole-only participants to enjoy drinks and dinner, a chance to win raffle prizes, the awards ceremony, and afterglow party. Cost of this added event is $35 a ticket. Entertainment and music will be provided by Phil James and Paul Pope, from 6:30 -10:00 pm, providing an excellent time to wind down, relax, and forget, or remember, golf scores.
Registration for the outing and afterglow is available on-line at or by contacting Mike Bova (440-476-16110) or Marc Quayle (513-260-0649).
In Michigan, just nine days later, SFSF will host the Eighth Annual SFSF Michigan Golf Outing, Monday, June 16, 2014, at Warwick Hills in Grand Blanc, MI. Long-time home to the Buick Open, Warwick Hills is renowned for its large, outstanding greens and relatively short, parkland course of just 7,127 yards.
The $175 fee per golfer ($700, per foursome) includes greens fees, cart, driving range privileges, awards, hors d' oeuvres and dinner.
Register on-line and contact Bob Quayle (810-241-8340) or Brett Quayle (810-252-3053) for questions or additional information.
SFSF is graciously accepting raffle prizes, hole sponsorships, and donations for both outings; use contact names and numbers above.
SFSF anxiously awaits the golf outings, the disappearance of the white ground cover, and some great golfing weather!
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No winter lasts forever,
no spring skips its turn.
~ Hal Borland
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ALECPTA Ball features princesses and heroes
 | The ALECPTA Children's Parties Committee: Jill Andresen, Valerie Ambrose, Michelle Braun, Brooke Costin and Megan DeVere |
Avon Lake Early Childhood PTA had its annual Superhero and Princess Ball on Sunday, March 9, 2014, at Avon Lake High School; thirteen-year-old Ana Kopf was the princess with a heart of gold and SFSF was the hero of the day. ALECPTA sponsored a 50-50 raffle with the proceeds going to SFSF. Ana won the 50-50, and in true princess fashion, donated her winnings back to SFSF, giving The Foundation hero status. A total of $264 was raised from the raffle.
With over 280 in attendance, the event featured pizza, fruit, cookies, a DJ, a photo booth, and visits with real-life princesses and superheroes, who taught dance steps and superhero moves and told stories of princesses and superheroes.
The event always promises to be a fun afternoon for both parents and children. SFSF thanks ALECPTA, raffle ticket buyers, and especially Ana Kopf for their continued support and generosity.
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What's so special about St. Jude?
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The genome project statue on the
St. Jude Campus.
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"The mission of St. Jude Children's Research Hospital is to advance cures and means of prevention for pediatric catastrophic diseases through research and treatment." Moreover St. Jude generously shares its research with hospitals and treatment centers worldwide.
Designated as a Comprehensive Cancer Center by the National Cancer Institute, St. Jude, in conjunction with Washington University School of Medicine in St. Louis, is currently engaged in a pediatric genome project --- a joint effort to identify the genetic changes that give rise to some of the world's deadliest cancers; just one of the many endeavors to fulfill its mission. By decoding the genomes (the total genetic content) of more than 600 childhood cancer patients, St. Jude research teams hope to understand the genetic origins of childhood cancers, which will lead to new and successful treatment and therapies. St. Jude scientists are sequencing the entire genomes of both normal and cancer cells from each patient, comparing differences in the DNA to identify the genetic mistakes that lead to cancer.
To date, the project has made significant discoveries in several types of cancer: low-grade gliomas, both ETP-ALL and AMKL leukemias, medulloblastoma, neuroblastoma, retinoblastoma, and diffuse intrinsic
pontine glioma.
This world renowned genome project is the largest investment to date aimed at understanding the genetic origins of childhood cancer.
In addition to the fact that Sophie Quayle was treated at St. Jude, and that Sophie's tumor was donated to St. Jude, the genome project substantiates one aspect of SFSF's mission ---- to support St. Jude. Yes, St. Jude is special. Stay tuned to next issue of Smiles for the Season for more about St. Jude and its history and achievements.
Visit St. Jude's genome project site for extensive information and current updates.
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In the running, again
For the sixth, consecutive year, the SFSF Bash & Dash has been nominated for the "best charitable race" in the Best of the West Competition, sponsored by West Shore live well. The SFSF Bash & Dash has won first place honors three times, in 2008, 2009, and 2011.
Voting for the "best of... in the western Cleveland area" in over 60 categories, will take place at the LaCentre Conference & Banquet Facility in West Lake, Thursday, April 10, 2014, 6-9pm. Admission to the event, which includes a ballot, is $20 in advance, and $25 at the door. In addition to the opportunity to visit the booths of the nominees, sample their wares, and be eligible for special drawings, admission also includes a one-year subscription to Cleveland Magazine and West Shore live well.
SFSF volunteers will be on hand promoting The Foundation's Bash & Dash, as well as providing information about Sophie, The Foundation's mission, and other SFSF events and activities, especially the late spring golf outings. SFSF merchandise will also be available for purchase.
SFSF invites area residents to an evening of fun, food, and freebies, but most of all to the opportunity to select SFSF Bash & Dash as the best charitable race in the western Cleveland area.

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Wherever you go, no matter what the weather, always bring your own sunshine.
~ Anthony J. D'Angelo
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~~~~ Sincere Sympathy ~~~~
Smiles For Sophie Forever offers sincere sympathies and heartfelt condolences to the families of SFSF Grant recipients on the passing of their children.
Clifford Hamilton, age 11, astrocytoma, 3-11-14 Jah'navi Linton, age 6, DIPG,12-7-13 William Rieder, age 2, DIPG, 12-28-13 Dayshia Thompson, age 3, DIPG, 3-3-14 Nolan Weber, age 18, glioblastoma, 12-21-13
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