Spring, 2016

Issue 30

Emily's Intro...

Phew! We made it through winter (fingers crossed). I never was a fan of January and February, and now that February 21 will forever be the date that our lives changed with Sophie's diagnosis, it is one anniversary that I want to skip over. And now we have. Thank you to our friends and family who reached out to us in February. Your kindness is always a bright spot in a dark day.

As we head into our "busy" time, I tend to get overwhelmed by the number of things on my "to do" list. Then I read the articles below and reflect on how far we have come, and I feel a sense of reassurance that everything will come together just as it should. We have some amazing supporters who stand with us in this fight and keep us going when there seems to be not enough hours in the day. These people are heroes.

Earlier this month, I had the honor to meet with a group of dedicated and determined parents who have lost a child to DIPG or another form of cancer (see related article on the DIPG Collaborative). It was inspiring to be a part of a group, collectively working for the same goal. Each foundation has its own strengths and areas of focus, and each one is "all in" in their efforts. These parents are going to be the ones responsible for making a change.

Right now as you read this, there are parents in multiple places across the globe working on planning a fundraiser in memory of their son or daughter that they lost to DIPG. I now know there is literally a fundraising event taking place every week and weekend across the world, all in the hope of curing DIPG. So many parents are working so diligently to change DIPG from being a death sentence. I was inspired by these brave parents and was comforted to know that we are all in this together.

One piece that stood out to me in the meetings was awareness. Not just awareness on a local level, but on a national level. Several foundations have been working to gain awareness within our government. I feel it is important to share this with you, and ask for your help. It doesn't cost you anything and only takes a few minutes of your time. If we can get the government to recognize this disease, the hope is that down the road, additional federal funds will be allocated for research. We need more than 4%!

Thanks to the great work of Jack's Angels Foundation, Congressman Steve Knight introduced House Resolution 586, which expresses support for the fourth week in May to be designated as DIPG Awareness Week. Seven co-sponsors have joined the bill to date. Through this coordinated effort, please urge your representative to join as a co-sponsor! For those who don't know a lot about this process, making a call to your representative's office is simple and fast. They need to hear from their constituents about matters of importance to them. Call and read the script provided. Do this and you can be a hero.

TWO SIMPLE STEPS:
1. EMAIL your Representative, using simple online form.

2. APRIL 20 - CALL your Representative at their D.C. office & use script.

Get the details, links and script here and more information about H.RES 586 here.

Heroes. They are all around us. They are the supporters of our foundation. They are the collaborators in the funding, and of course they are Sophie and all of the courageous children who have battled or are currently battling DIPG and many other diseases. Heroes lift us, they inspire, they support, they guide, they help, they share, they donate, they protect, they fundraise, and they love us.

We are forever grateful to all of our heroes who join with us in our efforts, day after day, and now year after year. Your support is noted, valued, and so very much appreciated.

With gratitude and hope,

Emily Quayle

SFSF Board President

Sophie, Sarah, and Marie's Mommy

In search of thousands of hometown heroes

Hometown heroes are desperately needed --- more than 1000. The 9th Annual SFSF Bash & Dash will once again be held at Walker Road Park, Monday, July 4th, commemorating the 13th birthday of Sophie Quayle, the little angel who lost her life to DIPG almost nine years ago.

Registration for the 5K race and 1.5-mile, family walk is now open, as well as the plea for individual and team fundraising, securing corporate sponsors, filling pledge forms, and donating time and talent to the success of the event.

The Bash & Dash promises to be another family-oriented affair with kids' activities, a cookie walk, an obstacle course, snow-cones, cotton candy, complimentary, after-the-race goodies, concession stand items for purchase, the SFSF store with new merchandise, a silent auction, a Chinese raffle, a 50-50 raffle, and lots of quality time, anticipating afternoon 4th of July family picnics and barbecues.

The SFSF website abounds with detailed information on fundraising, volunteering, hotel reservations, and deadlines. The event, a 3-month, work-in-progress, requires many hands, and many hands make for light work. Contact Emily Quayle, SFSF president via email to offer ideas, volunteer, provide services, and solicit prizes.

Remember, SFSF needs hometown heroes to make this major fundraiser a success. The reward of effort is penniless, but priceless.

3v3 Basketball Tourney Rebounds

Amid the months-long planning and preparing for the Ninth Annual SFSF Bash &Dash, one, young SFSF supporter has her own, personal SFSF fundraising agenda.Thirteen-year-old, St. Raphael seventh-grader Kayla Bucci, daughter of SFSF Board members Andrea and Dan Bucci, models her parents as she works relentlessly on her brainchild, the Second Annual SFSF 3v3 Basketball Tourney, slated for Saturday, July 30, at Avon Lake High School, beginning at 10:00am.

With the phenomenal success of last year's event, Kayla has improved and expanded this year's event. With both gyms in use, the tourney can accommodate as many as 80 teams. The whole-day, double elimination competition is open to both boys and girls teams, in grades four through eight, and will also feature a concession stand for players and spectators, raffles and prizes, and the SFSF store.

Registration fees are $100 per four-person team and include a tournament T-shirt. Kayla requests that the teams select solid, rainbow-colored game T-shirts to distinguish team members.

Winners will be named in each category and will receive prominent recognition. Although team members may play "up" a grade level, they may not play "down" a level. Registration forms, official rules, and waivers are all available on the SFSF website. For further information, email Kayla.

SFSF thanks Kayla for her innovative ideas, her enthusiasm, her work ethic and her dedication to her fundraising event and hopes to see many young cagers on the courts this summer.

I think a hero is any person really intent on making this a better place for all people.

~ Maya Angelou

High Five for Hometown Heroes

Tim, Luke and Allison Geiman.

Far from their hometowns, Allison (Surma) and her husband Tim Geiman, celebrated their son Luke's first birthday, not with comic Super Heroes, but in a real heroic fashion, by making a whopping donation of $945 to SFSF.

Allison, graduated from Trenton High School (Emily Quayle's Alma Mater) in 1996, with Charly Miklaski, Sophie's uncle and godfather, and her brother Scott graduated in 1992, with Sarah Smith, Sophie's aunt and godmother. Her husband Tim hails from Wilmette, IL. Allison and Tim met downtown Chicago, married in 2006, and moved between Chapel Hill and NYC before settling in Newport Beach in 2010.

After living in NYC for three years, the Geimans moved to California five years ago; despite their moves, the Geimans have not forgotten their friends "back home."

And although Luke turned one on December 24, 2015, they waited until one month later to celebrate Luke's birthday, avoiding the bustle of the Christmas holidays and making the celebration not just about Luke, but about Smiles For Sophie Forever.

Wanting Luke's first birthday to be special, and knowing that little Luke would not miss, nor remember, the gifts and toys of his first birthday, the Geimans stipulated that the event would be "gift-less," but that donations to SFSF would be more than welcome and appreciated.

According to Allison, "Luke is the gift" and "introducing him to the importance of volunteering, fundraising, and donating was our gift to him. Although Luke wouldn't 'get it', we knew one day he would."

The amazing "village" of Balboa Island, California, were the party guests, to whom the Geimans owed their warm welcome and now their help in raising Luke. The celebration took place at Balboa Island's bay front on January 24, 2016, a sunny and perfect day for an outdoor party.

Approximately 50 friends and neighbors celebrated with tacos, margaritas and cupcakes. Kids played with sidewalk chalk, bubbles and balloons along the boardwalk. A SFSF donation box was placed near the cupcake tower. Prior to Luke's cake smash the Geimans thanked everyone in attendance and provided them with more background on Sophie and the organization.

So moved by Sophie's story, one guest whose daughter was diagnosed with leukemia 30 years ago and believed St. Jude research helped save her life, returned the following day with an additional $100 donation.

Allison commented, "Through Facebook I've followed Sophie's journey and tireless fundraising efforts by your family and friends to end DIPG. I have been in awe of the strength and determination of the SFSF community. There was no question we would try to bring our community together to help support yours."

And support they did! SFSF thanks the Geimans, their community of Balboa Island, their heroism and heartily believes that Luke has two awesome parents.

THS Girls Soccer Team Are Hometown Heroes

The Trenton High School Girls Soccer Team takes on Gibraltar Carlson, in its annual charity fundraiser game, Wednesday, April 20, 2016, at 7pm on its home field, raising funds for both SFSF and The ChadTough Foundation, (established in memory of Chad Carr, grandson of Downriver native Lloyd Carr and former Michigan football coach), becoming a team of hometown heroes.

Traditionally, the team dedicates one game per season for a charitable cause, and through a suggestion by Soccer Mom Kellie Teska (sister of Misty Miller, friend and THS classmate of Emily Quayle and Sarah Smith, Sophie's mom and aunt, respectively), SFSF was named as a recipient.

The team opted to "fight DIPG" in their own way. The team raised money by conducting a very, successful bottle drive, Feb.13-14. Michigan has a "deposit law," and most canned and bottled drinks require a deposit. The girls solicit the "returnables" from residents and return them for their deposit value. At just 10 cents a bottle or can, a great amount of "returnables" was collected and returned.

Sophie's grandmother, Susie Miklaski, is looking forward to accepting the donation for SFSF during the presentation ceremonies at 5:30 pm, between the JV and varsity games.

SFSF is grateful for sharing in the efforts of the team and encourages Downriver residents to attend the event, supporting these hometown heroes.

DIPG Collaborative meets in Pennsylvania

DIPG Collaborative meeting attendees, April 2016.

SFSF President Emily Quayle, along with Board member Andrea Bucci, attended the DIPG Collaborative at the Westin Convention Center, April 1-3, in Pittsburg, Pennsylvania, held in conjunction with the Race For Grace Fundraiser, sponsored by Reflections of Grace, also a member of Collaborative of The Cure Starts Now.

A welcome dinner on Friday, April 1, opened the weekend event. Arriving in time for the race on Saturday, Emily joined the Race for Grace participants, running the hills around Norwin High School.

Board member Andrea Bucci joined Emily for the afternoon meetings, which featured seven Saturday sessions, focusing on the work of The Collaborative, fundraising, and current legislation related to pediatric cancer.

Sunday's morning sessions focused on the research grants funded by The Collaborative, featuring Keith Desserich, president of The Cure Starts Now, the research foundation to which SFSF has given $82,000 in funds. Plans for the 2017 Symposium were also discussed.

Representatives from fifteen members of The Collaborative were on hand to share ideas, discuss progress, and give support.

DIPG Collaborative welcome board at the Race For Grace.

Heroes are made by the paths they choose, not the powers they are graced with.

~ Brodi Ashton

SFSF grants approaching $700,000

Since January 2016, the Foundation has helped 14 families and awarded $14,000 in grant money, bringing the total amount of family grants awarded to $517,253. The grand total donated by SFSF, including donations to The Cure Starts Now ($82,000) and St. Jude ($90,562), is $689,815.

Every month, the SFSF Grant Committee approves applications for financial assistance for families of children with brain cancer. However, at the end of 2015, SFSF had exceeded their family grants budget, awarding over $100,000 in 2015 alone. Due to this, family grants were temporarily put on hold with a plan to resume awarding grants in February 2016. Replenishing funds from SFSF donors and fundraisers provided more grant dollars, and family grant applications were accepted again in February. The children of the families who received grants in February and March 2016 are:

Matthew, age 1 - high grade glioma
Daniel, age 8 - DIPG
Keira, age 6 - passed away from DIPG
Javasea, age 10 - pineoblastoma
Anonymous, age 7 - germinoma
Emma, age 6 - passed away from DIPG
Michael, age 9 - pilocytic astrocytoma
Allison, age 5 - passed away from DIPG
Addison, age 4 - PNET
Annabella, age 4 - optic nerve glioma
Nicholas, age 8 - passed away from an ATRT
Akyra, age 14 - passed away from an anaplastic astrocytoma
Catherine, age 20 - grade IV glioblastoma
Anonymous, age 6 - pilocytic astrocytoma

In This Issue

DIPG Collaborative Meeting

SFSF Family Grants

SFSF Golf Outings

Brain Tumor Awareness Month

FMU Ninja Athletes support SFSF

College Senior Raises Awareness

SFSF BINGO Night

2016 Appeal

Golfers look "Foreward" to Upcoming Season

Weather-wise, it's been quite an unusual winter and spring in the Midwest, with record-breaking 60's in January, and 8-10 inches of snow in April, but one thing is certain, summer is coming, as is the much-anticipated golf season. And, SFSF is ready indeed.

On Monday, June 13, even before summer's official start, Warwick Hills in Grand Blanc, MI, will be the venue for the Tenth (yes, tenth!) Annual Michigan Golf Outing, planned and organized by Bob and Kathy Quayle, Marc's parents, and Brett and Amy Quayle, Marc's brother and sister-in-law.

Once the home of the Buick Open, Warwick Hills is considered one of the best-conditioned courses, with some of the finest putting greens on the PGA tour. The $175 per individual fee includes green fees, a cart, driving privileges, dinner, and hors d'oeuvres. Registration begins at 11:00 am, the shot-gun start at 1:00pm, and dinner at 6:00 pm will provide a full day of golf and entertainment for SFSF supporters. (Visit the MI Golf Outing webpage to register and/or contact Bob Quayle at 810.241.8340 or Brett Quayle at 810.252.3053 for additional information.)

The Fourth Ohio outing, customarily on the first Saturday of June, will be on Saturday, July 23, 2016, at Sweetbriar Golf Club in Avon Lake on Legacy 18 --- the front and back nine of Legacy --- offering two differing landscapes. The $125 fee per golfer includes green fees, cart, lunch, dinner, and beverages. Registration and lunch precedes the 1:00 pm shotgun start; dinner and awards begin at 6:30pm. (Visit the OH Golf Outing webpage to register and/or contact Marc Quayle at 513.260.0649 or Mike Bova at 440.476.1611 for more information.)

SFSF is planning two fun-filled, warm, and much-anticipated events for those weary of winter, and the crazy and cold spring. See you on the greens!

Awareness heroes needed this May

Brain tumors can be deadly, significantly impact quality of life, and change everything for a patient and their loved ones. They do not discriminate, inflicting men, women, and children of all races and ethnicities. The below statistics* show the impact:

688,096 Americans are living with a brain tumor and more than 28,000 of those are children (0-14 years of age)

Another estimated 77,670 people will receive a primary brain tumor diagnosis in 2016, with an estimated 4,630 of those being children and adolescents

An estimated 16,616 people will die from malignant brain tumors (brain cancer) in 2016

Brain tumors are the leading cause of cancer-related deaths in children under 14

It is estimated that, in 2009, a total of 47,631.5 years of potential life were lost due to brain tumors in children, 0-19 years old

More than any other cancer, brain tumors can have lasting and life-altering physical, cognitive, and psychological impacts on a patient's life.

Despite the number of diagnosed brain tumors, and their devastating prognosis, there have only been four (4) FDA approved drugs - and one device - to treat brain tumors in the past 30 years.

*Statistics as reported by the National Brain Tumor Society

In May 2008, the U.S. House of Representatives officially recognized May as National Brain Tumor Awareness Month and brain tumor awareness is symbolized by the gray ribbon, however this ribbon still remains unknown to many. Despite the fact that brain tumors are the leading cause of childhood cancer death, not nearly enough is being done in regards to awareness and the lack of funding for pediatric cancer research.

This May, make an effort to help raise brain tumor awareness by wearing gray or displaying the gray ribbon and sharing Sophie's story; donating to SFSF or any organization funding brain tumor research; or participating in an event to raise money or change legislation. The organizations listed below have many events throughout the year and across the country, so wherever you are, be a hometown hero for brain tumor awareness!!

National Brain Tumor Society

American Brain Tumor Association

Brain Tumor Alliance

FMU Beats Winter Blahs with SFSF Fundraiser

FMU has done it again! On Feb 12-13 (President's Weekend), a second Youth Ninja Athlete Championship was held at FMU with full proceeds of $1900 donated to SFSF.

THE YOUTH NINJA WINTER CHAMPIONSHIPS included Fitlets (ages 5-6) and Inspire (ages 7-8) divisions, who competed on Friday evening, February 13, 2016, as well three, separate divisions, ranging in ages, 9-14, competing Saturday, from 9am - 1:30 pm.

SFSF thanks Amber and Paul Theodore, FMU owners and SFSF Board members, the volunteers, the parents, and of course, the competitors, who helped make the event a huge success.

SFSF Board President Emily Quayle proudly reports that Marie Quayle (Fitlets) and Sarah Quayle (9-10 division) finished third and first, respectively, in their divisions

With maximum numbers in each age category, there was a total of 60 competitors, with each division filled to capacity.

According to Coach Theo, "This is one of the most inspirational things I've ever been a part of! These kids amaze me with their determination and heart to complete tough obstacle challenges in front of everyone!"

Click here to watch a recap of the awesome ninja athlete weekend.

Avon Lake's hometown hero, miles away

Maggie Lehr with her presentation on Pediatric Brain Cancer.

Avon Lake has a hometown hero, helping from afar. Maggie Lehr, former West Winds resident, now living in California, hasn't forgotten her roots, nor SFSF.

Currently, a final semester senior at Sonoma State University in Rohnert Park, CA, majoring in Liberal Studies with an emphasis on elementary education, Maggie says, "I have never forgotten the two little Avon Lake girls who have impacted both my senior graduation project, my career choice, and my fundraising efforts. I chose "Pediatric Brain Cancer Fundraising" as the topic of my senior project and I have written a 10-page paper about pediatric brain cancer and fundraising."

In addition to her presentation and paper, Maggie did some of her own fundraising through a "Go Fund Me" appeal raising $407.45 which she graciously donated to Smiles For Sophie Forever. She has also used and publicized the on-line fundraising programs, such as iGive and AmazonSmile to promote SFSF fundraising, however, the specific impact of these on-line programs is difficult to determine.

"My goal was to find an organization that gives part of the money they receive back to the families who need it the most. My findings were surprising and the lack of research for pediatric brain cancer is devastating. It is my hope that through awareness and my fundraising, I am one step closer to finding better treatments for this horrible disease." SFSF has indeed helped to meet Maggie's goal.

Maggie lived in Avon Lake until her parents, brother Michael (19) and sister Coleen (18) moved to California in 2010, after her sophomore year at Magnificat High School. Having attended St. Raphael's Elementary School, Maggie had also known St. Raphael student Maria McNamara who passed away from DIPG in July, 2007.

Maggie's cousin, Patrick, also lost his battle with brain cancer in 2012; Maggie is no stranger to the devastation of pediatric cancer.

Currently completing her "Multiple Subjects Teaching Certificate" this semester, Maggie hopes to teach in a pediatric wing of a hospital "where children miss out on so much."

SFSF thanks Maggie for her valiant efforts and her sincere concern and wishes her great success.

A true hero isn't measured by the size of his strength, but by the strength of his heart.

~ Zeus

Be Involved, Now GO

To SFSF Vendor BINGO

The first-ever SFSF Vendor Bingo will be Wednesday May 4, at The Stray Goose Grill & Tavern in Avon, OH. For a mere $10 for ten rounds of bingo, participants not only have a chance to win prizes, but will also get an "extra playing" sheet if they purchase an item from any of the vendors present.

Companies represented include: Fit Team, Jamberry, LulaRoe, Norwex, Origami Owl, Pampered Chef, Posh, Rodan & Fields, Scentsy, Stella & Dot, Tastefully Simple, and Younique.

Shopping and socializing is from 6-7pm; bingo begins promptly at 7pm; an intermission will allow for more shopping and socializing.

SFSF invites all area residents to come out for a fun-filled, evening of games, good times, and good works. All proceeds will benefit SFSF.

For the record...

Women in Construction

The Cleveland Chapter of the National Association of Women in Construction (NAWIC) has donated $408 to SFSF, representing the shared profits of the Chinese auction held at the 12th Annual Joint Associations Holiday Social, held December 3, 2015 at the Embassy Suites in Independence, Ohio. Along with seven other associations, the Cleveland chapter enjoyed networking and renewing friendships, as well as entertainment by Rick & Sharona, offering show tunes and holiday music.

The Chinese Auction provided the members with the opportunity to win 15 incredible baskets, sharing the profits of ticket sales with Northeast Ohio SPCA, Smiles for Sophie Forever and the United Way of Greater Cleveland.

Member Monica Bruaw, a friend of Emily Quayle, with whom she attends Fit Me Up, was instrumental in suggesting SFSF as one of the charities of choice to benefit from the auction. This is the second year that SFSF had been selected.

Endowment Award

SFSF received a much-welcomed, but totally-surprising, donation from the Raymond James Endowment Fund. Accompanying the donation, received in late February, was the message: "This grant in the amount of $500.00 is made possible through the generosity of Lynda L Ufer Account."

Ms. Ufer was Emily Quayle's first grade teacher at Anderson Elementary School in Trenton, MI, many years ago. Another beautiful example of hometown heroism. Emily Quayle was quite moved by the donation and by being remembered by her first grade teacher. SFSF graciously thanks Ms. Ufer for her generosity and for inspiring others to follow her lead.

Babysitting for SFSF

As a requirement for her service hours, leading up to her Confirmation at Holy Spirit Church in Avon Lake, Ana Koph was challenged to complete service work, and then donate her earnings to a charity. Ana donated her hard-earned $75 to SFSF. As a volunteer at Holy Spirit Sunday School, Ana is no stranger to service work, attests Emily Quayle, whose 4-year-old daughter Marie, is a member of the class in which Ana helps out.

iGive

iGive, the on-line shopping "button" is running a special through April. In addition to the stipulated donation amounts per participating "store." iGive will donate $5.00 for every new member who tries the iGive button to help Smiles For Sophie Forever. Furthermore, no purchase is necessary. The offer will expire April 30. SFSF encourages supporters to give iGive a try; it can't hurt, and will only help!

AmazonSmile

A donation of $108.98 was added to the SFSF coffers by Amazon, thanks to all SFSF supporters who use the AmazonSmile site. Most Amazon items are all available through AmazonSmile. It is a painless, cost-free way to support SFSF. Summer shopping on-line? Use AmazonSmile and designate Smiles For Sophie Forever as your charity of choice.

The Rock Pile

Area residents have begun their spring yard buying at The Rock Pile. Another $16.03 was added to SFSF's account, and there's still snow on the ground. Remember to shop at The Rock Pile for spring gardening needs, and mention SFSF at checkout for the 5% of sales earmarked for SFSF.

United Way

As a receiving charity, SFSF was awarded $37.33 from United Way. Know that paycheck deductions to United Way help many non-profits in the area.

SFSF hears the music, loud and clear

The 8th Annual SFSF Appeal, "Music to our Ears," hit the mailboxes in the early weeks of February, and donations totaling $9207.23 have been received to date, exceeding last year's amount. "With a song in our hearts," SFSF graciously thanks donors, both new and repeat, for their generosity.

In the words borrowed from Plato, appearing in The Appeal, "Music gives a soul to the universe, wings to the mind, flight to the imagination, and life to everything," including SFSF.

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