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Winter, 2017                                                                                                    

Issue 33  

Emily's Intro...
Em's St Jude bib 2016
Emily's St. Jude bib and newly gifted shoe charm

As I sit down to write this introduction, I realize it really has been a while.  We normally send out a newsletter in December, but we had some unexpected events come up at the Memphis marathon; we extended our stay and everything else got put on the back b urner.
 
Speaking of Memphis, be sure to check out the article below about our team and our fundraising.  We had another great year, a nd we sincerely  thank all of you who have continued to support us, so that we in turn can support the very wonderful facility that is St. Jude Children's Research Hospital.  December of this year will be my tenth year traveling to Memphis.  Say what?  I really am getting too old for running!  We had a special opportunity to sign up for 2017 at the expo this past December.  I picked the half marathon, but am still considering doing the full again, especially if there are any first timers interested in making Memphis their first marathon.  So many people inquire about the weekend and say, "I want to go!"  Some may be only half serious, but if you are reading this and are truly considering joining our team this December, send me an email.  That way I can remember to include you when I get details about the registration which typically opens in May.  Everyone is welcome to join us for a marathon weekend like no other.  They have four events to choose from:  the full marathon, the half marathon, a 10K and a 5K.  You won't regret going, and you have almost a year to train! 
 
The marathon isn't the only "10-year anniversary" this year.  In February, it will be ten years since we started on this journey and joined a club no one wants to be a part of.  I can't believe it --- ten years since the dreaded diagnosis of DIPG. Ten years seems like a lifetime some days, and other days I can so clearly remember little, innocent, pre-cancer three-year-old Sophie, as it were yesterday.  
 
In terms of research, small strides are being made, but still today, children diagnosed with DIPG are given the same terminal diagnosis that we were given.  Foundations are collaborating and funding lots of research, and hopefully soon, this research will evolve into a cure.  We are proud that one of the first projects that we helped to fund through the DIPG Collaborative (the DIPG Registry) is fully up and running and will host a wealth of concrete DIPG data for researchers and families as we move forward in the fight.  Read here for more info on the registry.
 
This year will also be our 10th Annual Bash & Dash.  I vividly remember planning the first one with my dear friend Kristin Van Euwen; it is hard to fathom that Sophie would be turning 14 this year.
 
And so we march on, our small, all-volunteer, board of directors, who truly keep this foundation running.  I am so grateful for the work they do to honor Sophie and to make a difference in the lives of other kids and families.  
 
As we approach our season of fundraising, I would like to offer all of you who may be reading this, and want to take your support to another level, the opportunity to help with the planning of our summer events: both the race and the Ohio golf outing.  Again, please email me if you would like to know more.  There are many ways to get involved. Many hands make for light work.  
 
We thank you graciously for your continued support.
 
Many blessings to you and your loved ones in 2017.

With gratitude and hope,
Emily Quayle
SFSF Board President
Sophie, Sarah, and Marie's Mommy 
 
Team SFSF in Memphis for ninth consecutive year
2017 St Jude SFSF Team
2016 Team SFSF at the Heroes Pasta Party.

Donations totaling $69,824 were raised by Team SFSF for this year's St. Jude Marathon Weekend in Memphis, December 2-3. This total also included the $20,000 from SFSF, which was made in keeping with SFSF's mission of supporting St. Jude. The majority of the 24-man team registered as fundraisers, several as St. Jude Heroes, surpassing the $2500 Gold Hero status.

Registered team members were Angie Allen, Kathy Farquhar, Tate Farquhar, Evan Gillen, Rachelle Gillen, Keri Haibach, Lauren Hicks, Kelle Ilitch, Travis Ilitch, Kristina Juech, Matt Juech, Sharon Lopata, Charly Miklaski, Susie Miklaski, Andrea Morton, Dana Nicklas, David Plautz, Emily Quayle, Jennifer Slater, Sarah Smith, Kristin Stobe, Amber Theodore, Heather Tinsley, and Amy Wilson. Unfortunately, two members were unable to travel to Memphis: Matthew Jeuch (work-related) and Susie Miklaski (injury-related).

Highly visible in their bright, neon yellow shirts, with a rainbow heart on the front and Sophie's picture yet again gracing the back of the shirt, the Team proudly attended the Pasta Party on Friday night, after almost the entire team toured St. Jude Hospital earlier that day. The highlight of the Pasta Party was Team Captain Emily Quayle being recognized as one of the top five, individual fundraisers, with a total of $24,583.

Although a slight drizzle of intermittent showers occurred on race day, the weather was almost perfect for running the 5K and 10K. Raindrops fell upon the heads of the half and full marathoners. Charly Miklaski was the only full marathoner on this year's team.

Several team members accepted the challenge made by ALSAC CEO Rick Shadyak following the race, who encouraged all fundraisers to secure $100 more in donations before January 3, 2017; this added effort brought Team SFSF oh-so-close to the $70,000 mark.

SFSF thanks all team members, their families, and their supporters for once again helping to fulfill the promise of Danny Thomas: "No child should die in the dawn of life."
2017 St Jude SFSF Team shirt
 
No whining about Waterfront Wine Fest
2017 FMU at Wine Fest
Some of the FMU members who worked out, worked, attended and then worked again to secure the donation for SFSF!

Although occurring almost six months ago, the Avon Lake Waterfront Wine Fest was not only a city-wide success, but also proved to be extremely beneficial to SFSF which received $6165.00 from the event --- $5,000 from the Avon Lake Waterfront Corporation and $1165 from Peter and Co. Jewelers, thanks to Board Member Dan Bucci.

SFSF Board Member and Avon Lake Councilman Dan Bucci, with a group of friends, created Avon Lake Waterfront. The "welcome-summer" Waterfront Wine Festival, is one of the group's showcase events. Held at Veteran's Memorial Park, the June 25th event, in its fifth year, provided guests with wine-tasting from nine, Lorain County wineries, food from local restaurants, music, and vendors from around the Cleveland area.

In return for being this year's benefactor, SFSF provided the muscle of both men and women for the "set-up" and the "tear-down" of the outdoor event, held on a beautiful summer evening, with perfect views of Lake Erie. Instrumental in organizing and providing the "muscle men and women" as the workers, and FITtingly so, were SFSF Board Members and FMU (Fit Me Up) owners, Amber and Paul Theodore, whose crew proved very FIT to serve as work horses.

SFSF thanks Dan Bucci, the Avon Lake Waterfront Corporation, the volunteers, and all who attended who helped to begin the summer fundraising for SFSF with a bang, a perfect prelude to the July 4th Bash and Dash.

For more information on the Avon Lake Waterfront Corporation, visit their website.  
 
Summer Solstice Foundation brings more than hours of sunshine to SFSF
 
Once again, several members of the Ohio Chapter of the Summer Solstice Foundation golf outing chose SFSF as its benefactor of their annual longest day of golf outing, held June 24, at Catawaba Island Club on Catawaba Island in Lake Erie. The Ohio Chapter, established by Ryan Brown in 2013, consists of 28 golfers from the Cleveland area who golf from sun up to sun down, to raise money for the charity of their choice.
 
This year, 24 golfers, playing 54 holes, participated in the event, with $3,025 in donations earmarked for SFSF, bringing a great deal of sunshine to SFSF. The Ohio Chapter, in its fourth year, has raised over $100,000 for children's charities throughout northeast Ohio and across the US.
 
"The Summer Solstice event is a great opportunity to connect with friends while doing something special for our community and charities. Smiles For Sophie Forever is a charity that many participants feel connected with through the Avon Lake community.  We are very proud of our efforts and thrilled to be able to help increase awareness," said Ryan. Ryan first heard of and chose SFSF last year after his wife Katie sponsored a yoga fundraiser at Fit Me Up to benefit SFSF.

Founded in 2010, the Summer Solstice Foundation was established in Baltimore, Maryland, for the sole purpose of raising funds for charities, by playing as many holes on or around the longest day of the year.
 
For additional information about The Foundation, visit their website.

 

 
 
We rise by lifting others.  

                                                                          ~ Robert Ingersoll
 
 

 

4th Annual Holiday Extravaganza ushers in Christmas shopping under one roof

Organized by former SFSF Board Member and 2-year Bash & Dash race director Kristin Van Euwen, the Holiday
Extravaganza, held at Holy Spirit Church on Saturday, November 12, 2016, once again brought out many SFSF supporters and shoppers. With the opportunity to order from 26 vendors and several "at-home" businesses, in time for Christmas delivery, the event enabled participants to not only shop, but to shop among friends and neighbors in a casual atmosphere, not provided in the busy and bustling malls and stores. Moreover, the event added $1503.82 in profits to SFSF, giving The Foundation an early Christmas present. In addition to the Extravaganza's profits, Kristin, a LuLaRoe consultant, donated a portion of her total November sales to SFSF, adding another $114 to the total. LuLaRoe also committed to matching Kristin's November donation.

Popular and trendy vendors showcased their wares, demonstrated their goods, and offered items for the accompanying Chinese raffle. Among those represented were: Rodan + Fields, Kuddle Katz, Younique, Thirty-One, LuLaRoe, Stella & Dot, Norwex, KEEP Collective, Partylite, Wildtree, Tastefully Simple, Scentsy, Mary Kay, Pampered Chef, Ever Skin Care, Perfect Posh, Trades of Hope, and My Grace and Heart.

Several "at-home" entrepreneurs were also in attendance, including: Angela Luca - pumpkin rolls, buckeye rolls, and buckeyes; Katrina's Krafts - decorative lighted bottles; Anna's Candies - homemade chocolates; Melissa Walls Designs - custom wood boards, note cards, teacher gifts and home décor; and Judith Dowling - American Girl doll clothes.

Also available was the SFSF-sponsored baked goods sale, the SFSF store, and of course, the 2016 SFSF Christmas ornament.

Adding to the homey setting, was the opportunity to share coffee, goodies, and lunch with acquaintances who share their support of SFSF. SFSF thanks Kristin Van Euwen, the vendors, the entrepreneurs, the shoppers, and the volunteers for bringing an early Christmas donation to The Foundation.
 
On the ball, and over the bar
Coach Theo, Grant and Marc Quayle.

Nine-year-old Grant Barr celebrated his September 22nd birthday playing with friends at Westland Recreation. Opening presents was not on the party's agenda; Grant requested that, instead of bringing presents, his guests could make donations to Smiles For Sophie Forever. A birthday wish was GRANTed; SFSF received $270 in "birthday gifts."

The son of Jason and Heather Barr, Avon Lake residents, Grant loves being active and loves sports. Besides the workouts and challenges at FMU (Fit Me Up), where he has been a member for over a year, Grant plays football, basketball, and baseball. According to his dad, "If it has a ball, he's in!"

While at FMU, Grant learned about SFSF from Coach Theo, who was encouraging the youngsters to partake in the Ninja Athlete Championships which was being held to benefit SFSF. When re-telling his parents about Sophie, SFSF, and the Ninja competition, he knew he wanted to do something to guarantee that other kids could play and enjoy life as he did. Having a "gifts-for-SFSF" birthday was the answer. Grant also joined the FMU Ninja Championships last year and received a first place in his age category, once again "topping the bar."

Currently a third grader at Avon Heritage School, Grant is a young man of few words, much action, and a very big heart.

SFSF thanks Grant, his parents, and Grant's friends for their generosity and for being on the ball when it comes to others.

 

SFSF grants over $800,000

Since August 2016, the Foundation has helped 42 families and awarded $42,000 in grant money, half of that coming from Jenna's Rainbow Foundation, bringing the total amount of family grants awarded to $612,253. The grand total donated by SFSF, including donations to The Cure Starts Now ($82,000) and St. Jude ($110,562), is $804,815.

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, November and December 2016 are:
  • Anonymous, age 14 - anaplastic ependymoma
  • Roszetta, age 17 - pineoblastoma
  • Walker, age 7 - medulloblastoma
  • Josiah, age 14 - ependymoma
  • Jenesis, age 3 - ependymoma
  • Grace, age 1 - ATRT
  • Jaeden, age 9 - ependymoma
  • Mason, age 9 - DIPG
  • Ethan, age 9 - DIPG
  • Keegan, age 11 - astrocytoma
  • Adrianna, age 2 - pineoblastoma
  • Darcy, age 3 - medulloblastoma
  • Maximillian, age 4 - astrocytoma
  • Rayna, age 8 - pituitary germ cell tumor
  • Victoria, age 15 - passed away 11-7-16 from a gliosarcoma
  • Fletcher, age 10 mos - pilocytic astrocytoma
  • Railee, age 4 - DIPG
  • Marissa, age 13 - ganglioglioma
  • Ella, age 10 - high grade glioma
  • Tommy, age 6 - passed away 11-3-16 from a DIPG
  • Gabriel, age 7 mos - high grade glioma
  • Amara, age 4 - oligodendrioglioma
  • Brooklyn, age 4 - DIPG
  • Paisley, age 3 - anaplastic PXA
  • Mason, age 2 - passed away 10-20-16 from an ATRT
  • Baylee, age 5 - DIPG
  • Luis, age 1 - passed away 10-30-16 from a DIPG
  • Anonymous, age 6 - pilocytic astrocytoma
  • Anonymous, age 1 - ATRT
  • Analee, age 6 - brain tumor
  • Iyana, age 8 - passed away 6-8-16 from a DIPG
  • James, age 13 - medulloblastoma
  • Alonzo, age 4 - pineal germ cell tumor
  • Matthew, age 17 - ATRT
  • Angel, age 7 - DIPG
  • Anonymous, age 9 - ganglioglioma
  • Anonymous, age4 - medulloblastoma
  • Sean, age 17 - brain tumor
  • Blake, age 9 - craniopharyngioma
  • Sophie, age 4 - optic nerve glioma
  • Jack, age 5 - ependymoma
  • Katherine, age 11 - medulloblastoma
In This Issue
Annual Appeal, on its way 

The 2017 9th Annual SFSF Appeal, "SFSF, a Work of Art," like the Appeal itself is "a work in progress."
 
Focusing on the concept that indeed, The Foundation, "designs, draws, creates, paints, adds color, and leaves a lasting impression," this year's appeal will feature some of Sophie's works of art, held dear by her family and friends.
 
Now in the production stage, the Appeal should arrive in mailboxes within the next few weeks. As all other SFSF fundraisers, The Appeal supports the tri-fold mission of The Foundation. Appeal donations continue to increase yearly with last year's Appeal adding $15,845.08 to The Foundation's working capital.
 
SFSF Video wins top honors 
in Hyland Software competition
 
Andrea Bucci, SFSF Board Member, along with Mike Quinn, both employees of Hyland Software, joined forces, brain power, creativity, and promotional skills to create a SFSF video for Hyland's Non-Profit Video contest this past December, with hopes of SFSF winning the competition and receiving a portion of the profits of Hyland's Holiday Prize Raffle.  Brian Sabin, Mike's friend and a STACK Magazine employee who has produced videos on a professional level, donated his time and expertise to produce the video. Brian and Mike are also FMU workout buddies and good friends with Coach Theo, an avid and convincing SFSF supporter.  Andrea, Mike and Brian's hopes became a reality, as the SFSF video was one of the winners and received a whopping $14,093 donation, providing great excitement and appreciation from SFSF.
 
Each year, Hyland offers employees the opportunity to create a short video featuring a worthy non-profit charity to be one of the beneficiaries of the contest.  From more than a dozen videos that were created, Hyland chose the top seven, allowing the top three choices to be selected by online voting of Hyland employees. The three winning videos shared in the profits of the raffle ticket sales, purchased by Hyland employees for the variety of twenty, very desirable holiday prizes, such as vacation packages, professional Cleveland sports tickets, and housecleaning services.
  
"Established in 1991, Hyland Software is one of the leading providers of deployable enterprise content management software in the state of Ohio...It markets products throughout North America, Latin America, Europe and Japan." (YP.com) Based in Westlake, OH, Hyland employs over 2000 individuals.
 
Watch the winning video using the password "SFSF2." Visit the site, not only to view the winning video, but to learn a little about The Foundation.
 
SFSF is so very grateful to Andrea, Hyland services employee, Mike Quinn, Hyland sales employee and Brian Sabin for the joint effort, hard work, and dedication to SFSF, and for securing the largest fundraising donation this year.
 
SFSF Board members since 2008, Andrea and her husband Dan, along with their daughters, Kayla and Mia, have been constant and dedicated SFSF supporters since its inception, and have been instrumental in several, major SFSF fundraisers.
 
 
 

                                                                                  ~ Mother Teresa
 
 
 
Lakeland High School worth its weight in gold
Gold Out 2016
Lakeland High School's bleacher "Gold Out."

Lakeland High, in White Lake, Michigan, sponsored its first-ever "Gold Out Against Cancer" to benefit SFSF, Friday, Sept. 23, 2016; it was not only a huge success, donating a total of $3270 to SFSF, but its effects were felt throughout the district and even managed to spread to Lakeland's competition. Sportsmanship at its best!

The brainchild of Brad Farquhar, Lakeland's Building Liaison for Athletics & Activities, and the husband of Kathy, a Trenton High School friend of Sarah Smith's and Emily Quayle's, and Scott Rolando, Lakeland's Student Activities Director, the Gold Out originally began as a united effort of the students to show support by buying and wearing gold t-shirts to the Sept. 23rd KLAA division battle between Lakeland and Walled Lake Central's football teams, with profits from the t-shirt sale earmarked for SFSF. All donations were to be made in the honor and memory of Lakeland Senior Spencer Hale who passed away this past summer from childhood cancer.
 
Quickly word of the Gold Out fundraiser spread and other high school groups and sports teams, as well as Lakeland's feeder schools joined in the fundraising effort, with White Lake Middle School, Oak Valley Middle School, and Lakewood Elementary not to be denied, holding their own Gold Out on Friday. Even the Walled Lake Central students purchased the t-shirts and wore them to the game.
 
Among the many efforts, coordinated by the Lakeland Leadership Class in conjunction with the athletic department were: the Pom Team held a raffle, the JOII Club sold gold glow stick necklaces to wear at the game, the hockey team bought and hung up gold balloons, the football team donated the proceeds of the 50/50 raffle, and the sophomore class sold gold clappers and gold beads to add to the game flair. A gold out powder puff game between the juniors and the seniors at 2:30 p.m. that afternoon served as the kick-off.
 
Emily Quayle, SFSF president, attended the game and sat on the field with Kathy and Spencer's family. Spencer's parents delivered the game ball, and following a moment of silence and the National Anthem, Emily was presented with a bouquet of golden sunflowers .
 
The following Saturday, the Lakeland Cross Country Team participated in the 34th Annual Linden Classic at Linden High School; once again the competition joined in as Linden made a charitable donation of $160 to SFSF on behalf of Lakeland and in lieu of a first-place trophy. It was clear that news traveled quickly throughout the area, and even the rival schools were on board with the cause.
 
Brad said that he hopes the Gold Out is even bigger next year and that more neighboring schools get in on the action...he's wanted to do it for years and finally got the opportunity to help organize the event with his job as the athletic director building liaison.
 
SFSF is very grateful for Brad, Scott and Lakeland's hard work, and thanks all of Lakeland High School, their students, and their faculty for the united effort (and that of its competitors).
Gold Out 2016 Collage
 
Ninja athletes meet the challenge
Youth Ninja Nov 2016
Coach Theo and some of the Ninja Athlete competitors. 

The Ninja Athletes reign again. For the third time in less than two years, Fit Me Up sponsored another Kids' Ninja Athlete Competition with profits earmarked for SFSF. The two-day event, held Nov. 18-19, had capacity teams in five d ivisions with over 90 kids competing. The older participants, ages 9-14, competed on Friday night, in three age groups, ages 9-10; 11-12, and 13-14, saving the early Saturday session for the younger, Fitlets, ages 5-6 and Inspire, ages 7-8. The second event in 2016 surpassed the February, 2016, event in profits, adding $2045.35 to SFSF's treasury. The weekend afforded youngsters the opportunity to engage in some great physical activity as the shortened daylight hours and cooler temperatures began limiting outdoor activities.

Under the organization, direction, and supervision of SFSF Board Members and FMU owners, Amber and Paul Theodore, the event focused not only on the physical challenges, but on the mantra: "It's not about me." Coach Theo added, "It's not about creating the next ninja warrior. It's about building confidence in these kids and instilling a joy and love for fitness that will hopefully last a lifetime."

Featured at the event was the brand new Spider Climb Wall, which proved to be another great FMU challenge. As was the Cliffhanger, another tough obstacle, which garnered an extra $25 donation to SFSF per Ninja Athlete who was able to complete it.

All registered participants received FMU shirts and first place winners in each division received a trophy. Among the winners were Sarah Quayle, first place (9-10 year old girls); Gio Theodore, second place (5-6 year old boys); and Marie Quayle, second place (5-6 year old girls).

To keep abreast of FMU events and activities and to see video clips of the competition, like and follow FMU on Facebook.

SFSF thanks Paul and Amber, FMU, the parents, the volunteers, and especially the participants who were so instrumental in another NINJA ATHLETE CHAMPIONSHIP.
Ninja Athletes in action.

 

 

 

I am wealthy in my friends. 

 

                                                                  ~ William Shakespeare  

 

 

I t's no surprise 

A rainbow-themed (what else?) 70th birthday pa rty for Board Secretary  Susie Miklaski, secretly planned and executed perfectly by her husband and her children and their spouses on November 26, 2016 at The Grand in Trenton, Michigan, was a total surprise for Susie. However, it was not a surprise that a few of her guests chose to donate to SFSF or St. Jude in lieu of a birthday present.

Adding to SFSF's coffers in Susie's honor was $200; $250 was donated to her on-going Team SFSF St. Jude Marathon campaign. Susie said, "My friends know what makes me happy." And a happy 70th it was! 
Frank and Susie Miklaski with some of their grandkids.
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