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Fall, 2013                                                                                                   

Issue 20

Terminal Tower Lit in Gold Emily's Intro...

 

I know that September is two-thirds over, and once again, I say where did the time go? Sarah's been in school almost a month, and my training miles are now in the double digits. Luckily, there are still a few days left for me to remind you to please do something, anything, for Childhood Cancer Awareness month. Even if it's to only take a few minutes to watch this video on DIPG and share it with your friends...every little act helps raise awareness. Several of the articles and fillers in this newsletter make reference to other ways to do something to spread awareness.  With the internet and Facebook, you don't have to look very far to find startling statistics about the prevalence of childhood cancer, or the lack of federal funding allocated to childhood cancer research.  That's why doing something, anything, big or small can truly make a difference. One awesome and exciting thing that didn't take much effort, but really helps to spread childhood cancer awareness is pictured here. Last week a friend of mine, Mo Loesch, gave me an application to complete, requesting that the Terminal Tower in Cleveland be lighted in gold for Childhood Cancer Awareness. Mo is such a wonderful woman, helping anybody, everybody, and all worthwhile causes. 

 

The striking profile of the Terminal Tower dominates the Cleveland skyline. Because of its height - 708 feet - the Tower is visible from virtually all areas of the city. It is lighted in various colors for different, events, causes, holidays. Click here to see the schedule.

 

I saw it all red, white, and blue the day after Sophie's Fourth of July Bash & Dash when my family was in town, and we all attended a Tigers/Indians game. (My family was in from Michigan; Tigers won that night!) It was awesome then! Anyway, on a lark, and very quickly indeed, I literally scribbled out the application! Lo and behold, the Tower was lighted in gold the other night. Look at the picture, isn't it awesome?!?! I was informed that it will be gold on other September days that haven't already been designated a certain color. It's my hope and my dream (I'll do the requesting), that every September, the Tower will be golden, as golden as all the children diagnosed with pediatric cancer.  

 

Just as exciting to me are the results of summer SFSF events that have come and gone. We surpassed our $50,000 goal for this year's Bash & Dash and the two golf outings were very successful as well. However, these successes I can only attribute to all our committed supporters, donors, businesses, volunteers, participants, family and friends. You are the ones who deserve the credit! It's been a good season of fundraising for Smiles For Sophie Forever! (See Bash & Dash).

 

And the year isn't over yet. We have a record number (20) of SFSF Team members taking part in the St. Jude Marathon Weekend, in Memphis Dec. 6-8, and with the SFSF donation of $15,000, we expect to raise close to $35,000. (See St. Jude). Many members have participated before, but we have veterans and newcomers, coming from six different states, all in the name of the SFSF Team. Team members are on the run, training and fundraising.  If you'd like one last chance to make a difference this September you could help us out by donating to one of the most inspiring places I know. (See article.) 

 

Whew! It's great to share this news with you.  

 

I'm off and running... 

 

With gratitude and hope,

Emily Quayle

SFSF Board President

Sophie, Sarah, and Marie's Mommy 

 

Spotlight: Addyson Clark

Addyson Clark

 

Meet Addyson Clark, this issue's Spotlight, and a bright, shining 5-year-old she is! Diagnosed with multi-nodular pilomyxoid astrocytomas in July of 2012, Addy and her parents, Jimmie and Amanda and two-year-old brother Korbin, have experienced over a year of ups and downs and smiles and frowns; their great faith, continued community support, and positive spirit have given them hope and perseverance. 

Addyson lives in Gattalin, Tennessee, and is receiving treatment at Vanderbilt Medical Center in Nashville. What  her medical diagnosis means in layman's terms is that she has three, inoperable tumors --- one on her brain stem, one on her optic nerve, and one on the back side of her brain. Her chemo regimen was to begin after a shunt was inserted to drain cerebral fluid which was being blocked by the latter tumor. An infection near the incision from the shunt insertion  delayed the start of chemo.
 

Plans were in the works for proton therapy (radiation)  in Indiana if the chemo which finally began in mid-August, proved ineffective. In late September, the Clarks traveled to MD Anderson Cancer Center in Texas for a second opinion. An additional chemo was administered in late September. MD Anderson concurred with the treatment, but an October MRI indicated tumor growth as Addy's eyesight and body control weakened.  With the adding of a new chemo in early October, the disappointment of tumor growth, and Addy's deteriorating condition, the Clarks remained positive, especially through the creation of Operation Cupcake Cutie.

 

On October 30, a second MRI (only three weeks later) indicated even additional tumor growth. Despite the failure of this new chemo, Addy enjoyed a Rascal Flats concert as well as a great Halloween party at Vanderbilt. Her bravery, stamina, and spirit prevailed.
 

Amid the increase in steroids and additional snafus in her medical progress, the Incredible Clothing Company created Addy's "cupcake T-shirt," offering the family a much-needed inspiration.  In mid-November both another new chemo and a visit to Indiana for pre-proton therapy was in the works, accompanied by the addition of Chip, a Goldendoodle, to the Clark's household.  At Vanderbilt, Addy loved the therapy dogs, and Chip was a natural for Addy's limited activities. Staying upbeat, Addy and her mom shared Thanksgiving treats with the medical staff and enjoyed the holiday crafts.  An article about Addy in the Tennessean, a feature on Addy on Ch.4 News, and riding on the Make-A-Wish float in her hometown parade filled the Clarks with diversion and hope.
 

Finally, an early Christmas present for the Clarks on December 19:  MRI report: Addy's tumors had shrunk! The new year was about to bring better things; unfortunately in mid-January, Addy fractured her femur when tripping over Chip. Deteriorating bone density from the chemo was attributed to the bad break. Chemo was put on a temporary hold. Addy's leg now sported a pink cast! Her iPad, collecting craft materials for Vanderbilt patients, and outings in her wheelchair occupied some of Addy's time. Addy loves doing crafts so collecting craft items for Vanderbilt patients was a welcome activity. Addy remained  her upbeat self, having her stuffed zebra's leg cast in pink, and even making an adventure of a tornado warning in her neighbor's basement. With resuming her chemo, she decided to name her access port, "Ruby the Tubie."  A new cast which included her foot as well, replaced the first cast which began sliding off her leg when Addy's appetite slackened, resulting in significant  weight loss. Both pictures with the Nashville Predators with their Flashes of Hope program and beginning the Predator's Beads of Courage chain offered a break in Addy's medical routine of chemo, therapy, tests, shots, and appointments. However, swelling of her optic nerve, loss of complete vision in her right eye, and learning to walk again complicated her spring, but her sense of humor prevailed. When seeing herself hooked up for an EEG, she exclaimed, "Rapunzel, let down your wires!"
 

During the summer, Addy enjoyed a gospel music camp, despite trouble walking, moving throughout the house on her scooter. A new wheelchair and planned pool therapy, plus being featured in a documentary on children with cancer, offered a bit of respite throughout the summer.
 

Making her new PT goals by late August with her beloved therapist, Addy will now continue with her chemo until June of 2014. The news of an addition to the Clark household brings excitement to Addy and Korbin who are looking forward to their new sibling. SFSF is excited for the Clark family and is happy to have been able to give the Clarks a family grant.
 

For a detailed, heart-warming, and faith-filled account of the Clark 's journey, please visit their Caring Bridge site.

 
 

 

Less than 5% of the Federal Government's total funding for cancer research is dedicated to childhood cancers each year.

 

                                                           

 
 

2013 Bash & Dash Surpasses Expectations

Bash and Dash start 2013
2013 Bash and Dash starting line.
 

Despite rising prices and additional fundraising incentive costs, the 6th Annual SFSF Bash & Dash has surpassed its $50,000 goal, with profits totaling $58,617.00, with only several, minor outstanding bills.  A generous $5000 donation by first-time supporter, Ann Stobe,  was a welcome gift, along with Nordson's $10,000 match for the second consecutive year.  Fittingly, the winner of the mini iPad, a fundraising incentive for those in the $500+ category, was won by the Stobe Family. 

 

Registered race/walk participants numbered 887, up from last year's 700's. The number of $100-Club fundraisers, earning a commemorative dri-fit shirt also increased. New this year was the opportunity to upgrade to a vintage, soft-wash race T-shirt for a $5.00 additional race fee; some 135 opted for the upgrade. 

 

Besides the traditional kids' activities of face-painting, sidewalk art, sno-cones, cookie walk, and balloon-twisting, this year's attractions included an obstacle course sponsored by Fit Me Up and a Flower-Box Craft booth sponsored by Lowes of Avon. 

 

Profits from registration fees, donations, parking, concession, raffle and silent auction increased; some expenses such as printing costs, race T-shirts, awards, and supplies also increased. The mini iPad purchase as a fundraising incentive added significantly to the outlay. New race signs and volunteer shirts were purchased as both had worn their wear after five years of use. 

 

All in all, it was successful event and a beautiful summer day, with only a sprinkling of rain after the last of the walkers crossed the balloon-arch finish line, even though heavy rains were predicted. Sophie once again sent her influence and blessing from the heavens, as only minutes after the last items were loaded and clean up completed did the clouds open up with torrents of rain. 

 

SFSF thanks all the participants, volunteers, fundraisers, corporate sponsors and donors for their continued support of the premier SFSF fundraiser.  SFSF hopes to see everyone back next Fourth of July, same time, same place, with five additional friends.

2013 Bash and Dash fundraiser incentive shirt
The "100-Club" fundraiser shirt design.
 

iGive supports Smiles For Sophie Forever

 

With Christmas a little over three months away and gift ideas in the works, a very simple click of the iGive button along with an online purchase will benefit Smiles For Sophie Forever. iGive is a free service to causes and members, and it is as simple as it sounds. iGive members can generate donations by shopping at any of 1,200+ stores. There are no costs, obligations, nor any hidden fees.  

 

It's all automatic! There are no codes to enter. When iGive members shop via special links (starting at the iGive.com website, the iGive Newsletter, or having installed the iGive Button), tracking enables iGive to identify the purchases of each individual iGive member with a member ID number.  Causes always receive 100% of the donation amount which is advertised on the web site.  

 

When shoppers start with iGive, member stores automatically send the needed information (order amount, order date, and  ID number) which identifies the user to iGive.com, (but meaningless to the online store) so that the donation to each member's designated cause is made. 

 

Every month, the funds due Smiles For Sophie Forever are calculated based upon fundraising activities that happened approximately 75 days earlier and a check is mailed to SFSF. To date, SFSF iGive shoppers have raised $389.76, and that's only from 24 different shoppers. Just think what a difference it would be if all of the SFSF supporters used iGive for their online shopping!! 

 

iGive began in 1997 and through word of mouth has grown to 300,000+ members supporting 50,000+ causes/charities and has raised over $6,000,000. 

 

Click here to join and help raise funds for Smiles For Sophie Forever, just by shopping online! iGive logo

 

Summer sizzles for SFSF 

 

Amid the normal, fun-filled summer activities, several Avon Lake children put aside themselves to sponsor SFSF fundraisers. 

 

Emma Van Euwen, who attended pre-school

Emma's rainbow birthday party
Emma's rainbow birthday party guests: (front row)Mackenzie Grove, Delaney Roth, Erik Van Euwen, Sarah Van Euwen, Molly Roth, Emma Van Euwen, Avery Tenerowicz, Mallory Roof; (back row) Jamie Gee and Sophia Cikalo.

with Sophie, decided to ask her friends whom she invited to her tenth birthday party to donate to SFSF, instead of bringing her presents. Her August 8 party, held one week after her August 1 birthday was a great tribute to Sophie.  After declaring, "Look at all the stuff I have, I don't need any presents," her mother, Kristin, obliged with birthday invitations, expressing Emma's sentiments.  In addition to the $200 in donations (gifts), Emma planned a rainbow themed party, complete with rainbow cake (See photo) in Sophie's memory and honor. The Van Euwens are no strangers to The Foundation. Besides participating in and volunteering at many SFSF fundraisers, Kristin served on the SFSF Board and as race director for two, consecutive years. SFSF thanks the Van Euwens for their generosity and continued support. Happy first, double-digit birthday, Emma!

 

Hunt Club fundraiser 2013
The Hunt Club bracelet team: Helena Wilson, Allison Kacmarcik, and Allison Matovic (not pictured, Megan McNally.

 

Girls from the Hunt Club subdivision, adjacent to Walker Road Park, site of six, consecutive SFSF Bash & Dash races, celebrated the last formal weekend of summer at Hunt Club's early Octoberfest, traditionally celebrated over Labor Day weekend. The girls sold their hand-made rainbow-loom bracelets, giving the profits to SFSF. Donating the profits, as well as the materials, was a great decision for the girls, as Avon Lake  Schools do not allow the rubber band, loomed bracelets in school. The $20.00 donation, the work of the girls, and their generosity are much appreciated by SFSF.

 

 

 

 

Two-thirds of childhood cancer patients

will have long lasting chronic conditions from treatment. 

                                              

 
In This Issue
Spotlight
2013 Bash and Dash results
iGive for SFSF
Kids raise money for SFSF
Childhood Cancer Awareness Month
Chili's supports St. Jude
SFSF Golf Outing results
St. Jude Marathon Team
SFSF Family Grants

childhood cancer awareness month September coming to an end; Cancer Awareness carries on 

 

September is Cancer Awareness Month, and Smiles For Sophie Forever not only promotes cancer awareness this month, but all year long. This issue features statistics and facts on childhood cancer. (Just a few, but very powerful).  It is the hope of SFSF that before the month ends, readers will share this information and support a cancer-awareness event or fundraiser (See Get Peppered at Chili's).  Choosing a way to make an effort doesn't matter, but the SFSF St. Jude Marathon Team hopes that making a donation to their fundraising efforts may be one way to show awareness and support. 

 

Sometimes an effort may seem quite small, but ends up being very powerful.  SFSF President Emily Quayle lit up Cleveland with the color gold (See intro) all in the name of childhood cancer awareness. So share any idea that comes about. Perhaps an unsuspecting effort will have profound effects.
 

Remember how the pink ribbon started with the Susan G. Komen Foundation? October Breast Cancer Awareness began with Susan's sister on a very small scale. Now it receives national attention during the entire month of October. It is the hope of SFSF that one day the gold ribbon which symbolizes childhood cancer will one day be as prominent a symbol as the pink ribbon. Surprise someone, wear a gold ribbon this month.  After all, the cause is a great one, the future of our nation: The lives of our children.  May the money raised for childhood cancer research be as abundant.

 
 

 

Cancer is the leading cause of death by disease in children under
the age of 15 in the United States.

 

                                         

 
 

Get Peppered at Chili's on Monday, Sept. 23; Support St. Jude

  

Susie Miklaski's pepper 2013
Board member and secretary, Susie Miklaski's online Pepper submission.

Each September during Childhood Cancer Awareness Month, Chili Heads and guests of the

casual dining favorite participate in an annual fundraising campaign to support the lifesaving work of St. Jude. During the Chili's More Hope Campaign For St. Jude,

guests are encouraged to donate $1 or more for the opportunity to decorate Chili's coloring sheets. Food servers, bartenders and hosts also raise money by selling customizable T-shirt, slap bands and other merchandise.
 

Formerly known as the Create-A-Pepper to Fight Childhood Cancer, the More Hope campaign grew out of a local effort that began in 2002 when seven Memphis-area Chili's raised $14,000 with nothing more than crayons and pepper coloring sheets. In 2003, the promotion expanded to include five Southeastern states; the regional effort raised $50,000.

 

In 2004, Chili's and St. Jude took the local program and expanded it into a national partnership. In addition to the coloring sheets, Chili's decided to donate an incredible 100 percent of net profits on the last Monday of September. The goal of the first national campaign in 2004 was to raise $2 million; Chili's raised more than $2.5 million.

 

In 2006, Chili's announced plans to raise $50 million over a 10-year period, the largest single partner donation in the history of the hospital. In honor of the partnership, a state-of-the-art-building was named the Chili's Care Center. Completed in November 2007, the center houses the bone marrow transplant inpatient floor, the Department of Radiological Sciences, inpatient activity areas and research laboratories. The center provides St. Jude kids with more sophisticated diagnostic imaging technologies and more precise radiation therapy.

 

With each passing year, Chili Heads and guests are more committed to St. Jude. This campaign has become an annual tradition uniting communities nationwide and in Puerto Rico, making Chili's the destination for families and friends to gather and enjoy great food while helping St. Jude.

 

In 2011, $5.3 million was donated to St. Jude as a result of Chili's fundraising efforts. To date, Chili's has donated more than $46 million to St. Jude, with another $2.6+ million raised in 2013. 

 

Share a colored pepper with St. Jude by using the #MoreHope hashtag on Facebook, Twitter, Pinterest and Instagram. Find more information about the campaign at Chili's more HOPE happens here website.

 

Don't forget this year's Chili's day is Monday, September 23, held across the nation. Visit a Chili's on Monday, September 23, 2013, and support a fantastic cause and great ongoing effort.       (http://www.stjude.org/chilis)

Chili's care center at St Jude
The Chili's Care Center, outside and inside, on the St. Jude campus in Memphis.
 

SFSF Supporters Go "Fore" Golf 

MI golf outing rainbow 2013
The perfect rainbow that graced the skies just as the SFSF MI Golf Outing got underway.

 

SFSF proudly reports on the success of both the Ohio and Michigan Golf Outings, raising a total of well over $16,700 for two days of glorious golfing. The Saturday, June 8 Ohio Outing at Sweetbriar in Avon Lake, sported 27 foursomes, netting $9,183.67; while the Michigan Outing in Grand Blanc, Michigan, at Warwick Hills had near capacity foursomes, adding another $7,591.54 to SFSF coffers, just nine days later. "Not bad! Not bad, at all!" claims Marc Quayle, Sophie's daddy, SFSF Board Member, and avid golfer.  

 

Marc attributes the success of the outings to not only the great weather and  still-spring dates, but also to the hard work and dedication of his parents and siblings in Michigan and his friends, SFSF supporters, SFSF Board members, family, and volunteers in Ohio, especially the Gamma Delta sorority gals from Cleveland State University, 

 

The dates for next year's outings have already been secured: June 7, 2014, at Sweetbriar and Monday, June 16, 2014, at Warwick Hills. Noteworthy is the photo taken by Marc's sister Leslie at the Warwick Hills outing, where storms hit in the morning, but ended with a beautiful rainbow arching above the course at the 1pm shotgun start. (See photo). 

 

Look for registration info, updates, and added attractions for next year's golf outings early next spring on the SFSF website. 

2013 OH Golf Outing participants
The participants of the SFSF OH Golf Outing.
 
 

 

Every year, an estimated 263,000

new cases of cancer affect children under the age of 20 worldwide...that's

720 new kids affected every day. 

                                                

 

 

Training and fundraising are top priorities 

for SFSF St.Jude Marathon Team 

marathon weekend 2012
2012 SFSF Team after the tour of St Jude: (front row) Jennifer Slater, Sarah Smith, Susie Miklaski, Emily Quayle, Trent Wilson, Elizabeth Rolinski; (back row) Frank Miklaski, Amy Wilson, Kathy Farquhar

The SFSF St. Jude Marathon team is off and running and raising money for St. Jude.  Training is getting easier as the temperatures are falling, well, for those in the Midwest, at least. Florida member Sarah Smith and Texas members, Seth Cooke, Lance Herron, and Charly Miklaski still have the heat with which to contend, and the latter three are all full marathon registrants. To date the 20-member team has raised $29,715, which includes a donation of $15,000 from SFSF which has been distributed among team members. The team members will continue to fundraise until race day, hoping to surpass $35,000. Currently, the team ranks among the top ten teams for fundraising.

 

To date, several members have reached their personal fundraising goals, with participants Amy Wilson, Andrea LaForce, and Jennifer Slater leading the team with personal donations of $2500 or more.  Additional team members are: Captain Emily Quayle, Kelly Bova, Leslie Deebach, Kathy and Brad Farquhar, Lauren Hicks, Doug and Misty Karn, Susan Miklaski, Adam and Elizabeth Rolinski, Nina Stanossek, and Trent Wilson. This year, nine members are veteran participants, and eleven are newcomers to the event.

 

The Marathon weekend is Dec. 6-8, in Memphis; Team SFSF

will have participants in all the events: full marathon, half marathon, and Grizzlies 5K. Again this year, all 20 members are registered as St. Jude Heroes and if you are ever wondering what it means to be a St. Jude Hero, check out this video and consider becoming a St. Jude Hero in an upcoming race or donate to the Heroes of the SFSF Team.

To donate to an individual member, find the member's page by clicking on his/her respective name on the list of team members.  

St. Jude Heroes

 

SFSF grants surpasses $370,000

 

Since Jun 1, 2013, the Foundation has helped 11 families and awarded $11,000 in grant money, bringing the total amount of family grants awarded to $293,353. The grand total donated by SFSF, including donations to The Cure Starts Now ($42,000) and St. Jude ($35,000), is $370,353.

 

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 June, July and August 2013 are:

  • Anai, age 9 - neurocytoma
  • Chase, age 9 - astrocytoma
  • Addyson, age 4 - pilomyxoid astrocytoma
  • Asheauna, age 9 - glioblastoma
  • Connor, age 8 - pilomyxoid astrocytoma
  • Maisa, age 9 - optical pathway glioma
  • Blake, age 4 - optic glioma
  • Sydney, age 13 - optical pathway glioma
  • Sincere, age 13 - medulloblastoma
  • Gary, age 21 - died from a brainstem astrocytoma June 2013
  • Samuel, age 9 - brainstem glioma
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