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Spring, 2011                                                                                                   

Issue 11

Emily's Intro...

Speaking of spring...

Happy Mother's Day to all the mothers reading this message. 

Here in Ohio, it seems that summer will never be here, and that somehow we still have plenty of time to plan for our busiest fundraising season.  Yet, despite what the rainy, cold weather might indicate, summer will be here before we know it.

In this edition you will find information about our upcoming events.  Of course our annual Birthday Bash and Dash on July 4 is our biggest event, and we hope you will read about what you can do to make this event a fundraising success and help us continue to provide support to families, as well as fund research and donate to St. Jude.  In addition, we have other local fundraising events that only require you to either eat out at Applebee's on May 19  (see article) or Max and Erma's on June 23 (details will be on web site) or purchase gardening products from The Rock Pile --- both of which are basically musts. When you do, Smiles For Sophie will benefit from your purchases.  Our fifth annual golf outing in Michigan is coming up as well for all of you golfers that live in the area.  Yes, golfers, too, will soon be able to enjoy their season. We really hope you can find sometime this summer to support us.

This issue also features some of the many fundraisers held since our winter Smiles For the Season. It's truly amazing to me to see the efforts made by so many, and to them and for their efforts, I thank you, as do all the mothers (and fathers) of children afflicted by brain cancer.

Personally, this summer is going to be busier than most as we are expecting a baby girl around the middle of June.  Of course the timing is going to be crazy, but we wouldn't trade it for anything!!!

Last year at this time, I reflected on the fact that brain tumor awareness month and Mother's Day both occur in May.  And for the last five years, I haven't been able to think of one, without thinking of the other. I know there are many mothers who know what I mean and can relate when I say Mother's Day is a bittersweet holiday.  If you are lucky enough to be a mother, I wish you a wonderful day, filled with many blessings.

Hurry Spring Weather! Hurry Sunshine! Hurry Blue Skies!

Sincerely,

Emily

SFSF president and Sophie's Mommy

 

 Silvernail crop

DIPG Spotlight: Juliana Silvernail 

 

Meet Juliana Silvernail --- a lovely, dark-haired 8-year-old from Virginia Gardens, Florida, diagnosed with DIPG in June, 2007, but who remained symptom-free for over two full years. 

 

As a two-year-old, Juliana displayed some problems with her speech, but considering she was exposed to two languages from birth --- both English and Spanish --- the problems were not deemed severe. After enrolling Juliana in day care to be with other children her age, her developmental delays seemed more pronounced. After several medical attempts to pinpoint Juliana's problems, with little success, an MRI was suggested to rule out microcephaly. Since Juliana's head size and growth was borderline, her parents did not have the MRI done. 

 

A routine, re-evaluation in March, 2007, led to her June, 2007, MRI and a totally, unexpected diagnosis of DIPG. Further scans, over the next two years, continued to reveal a stable tumor and Juliana experienced no additional symptoms.

 
In September, 2009, Juliana's left eye began crossing inward. Her October MRI revealed sixth nerve palsy and increased tumor growth. As a first-grader, Juliana began wearing an eye patch to help with her double vision and began a regimen of Decadron. Juliana developed headaches, leading to a decision for radiation therapy, beginning January, 2010. After 30 treatments, ending in February, Juliana was taken off Decadron, began losing weight, returned to school, and made the honor roll! A follow-up treatment plan took Juliana to Pittsburg Children's Hospital for a clinical trial with Dr. Jakacki.

 

Her participation in the trial remained "iffy" at first because of the
tumor's atypical behavior. However in April, 2010, Juliana was accepted
into the trial which consisted of a series of eight vaccines, administered every three weeks. Juliana and her parents, Sean and Angie, with the help of friends and family, Mercy Medical Airlift, and Operation Liftoff, continued to make the every-three-weeks trip to Pittsburg. Throughout the many weeks of the study, Juliana continued to blossom. By May she had returned to her normal weight, made honor roll again, and began preparing for her First Holy Communion.

 

In June, and with the completion of first grade, Juliana had been the subject of an NBC feature on clinical trials and enjoyed a visit to Nathaniel's Hope Make 'm Smile at Lake Eola in Orlando. July found Juliana not only in Pittsburg, but also in Virginia for a visit with Sean's aunt, who also took Juliana for another of her treatments. A July MRI indicated a stable tumor, although Juliana's eyes remained crossed. Plans for her Make-A-Wish trip to Disney World in August, visits with relatives, and being the "sponsor-child" of Florida International University's Women's Softball Team made July speed by. August made July's plans a reality --a week at Give Kids the World Village, with her parents and almost-daily guests. Thanks to the Village, Juliana's extended family members were treated to a daily meal and ice cream! In one week's time, she welcomed visitors on four of the seven days of her trip. The adventure was truly magical, and Juliana enjoyed every minute of being Tinkerbell, meeting the Disney princesses, partying with relatives, and taking part in numerous child-oriented activities at the Village and theme parks.


In September, Juliana entered second grade and enjoyed actually meeting the FIU softball team who had adopted her, looking forward to the many activities to follow.
The clinical trial's every-three-weeks protocol had ended, and Juliana's vaccines would now be administered every six weeks starting in October.

Since the completion of her radiation in February, 2010, Juliana's tumor had remained stable; Juliana had continued with her schooling and her First Communion training classes.

 

December is always a busy, busy month, and Juliana's December 9th birthday, her party at Chuck E. Cheese, a tour of Miami Shores Presbyterian Church's Living Nativity, seeing Peter Pan at Miami Children's Theater, driving through the Holiday Fantasy of Lights at Tradewinds in Colonial Creek, and watching the Nutcracker at Gusman Theater all added to the excitement and anticipation of Juliana's and her family's Christmas celebration. Not really fun, but exciting, was Juliana's strabismus surgery on December 21, at Bascon Palmer Hospital, resulting in perfectly straight eyes for Juliana's gazing at the Christmas tree on Christmas morning. After Christmas, Juliana and her father flew to Pittsburgh for her eleventh vaccine on December 30. This was followed by a second Christmas at Aunt Jenny's in Virginia over New Year's. On January 21, Juliana received her official welcome as a member of the FIU's softball team, complete with jersey, locker, glove, and ball.


Juliana's January 29 MRI indicated some enhancements and a larger tumor; her participation in the clinical trial was suspended. Following the January MRI, Juliana took ill, with bouts of vomiting, headaches, and lack of energy. She also developed a seventh nerve palsy and lost the ability to smile or close her right eye correctly. The illness was worrisome, but by mid February, she was somewhat better and enjoying the Miami Springs Daddy-Daughter Dance and Lion Country Safari with friends. However, her monthly MRI in February, indicated an even larger tumor, attributed to swelling and medications; Juliana remained in the trial though still unable to get vaccines.

 

In mid-March, Juliana and her family returned to Give Kids the World in Kissimmee to spend the day. Juliana continued to feel badly. Her mobility was starting to become limited because of left-side weakness that became apparent slowly over time. A March 26 MRI indicated "stable tumor with a larger area of necrosis." Sean and Angie decided that steroids for Juliana would be the best choice. By the beginning of April, Juliana was on the mend, anticipating Easter by seeing Hop. Juliana and her family were guests at the Eighth Annual David Hemela
and Michele Shephard Race for the Magic Bullet, sponsored by the Florida Brain Tumor Association on April 10. The Florida Brain Tumor Association (FBTA) welcomed Juliana and showered her with gifts, including a gigantic Easter basket, a Build-A-Bear Easter Bunny, movie tickets, and many other treats and monetary gifts.
 


On Good Friday, Juliana had another MRI; the tumor was stable. Dr. Jakacki called Juliana's father on April 30 and informed him that she was still convinced that the vaccines were causing the symptoms rather than tumor growth. She wants Juliana to start the vaccines again in June. In order to do this, Juliana would have to be on two mg of Decadron, and Dr. Jakacki and her other colleagues would have to agree to allow Juliana to continue, despite her tumor being the same size. Juliana will continue to receive monthly MRIs to monitor the vaccine's progress.


SFSF was pleased to have given Juliana's family four separate family grants and is hoping that for Juliana Silvernail, there is a silver lining in the cloud above her. Follow her story at www.caringbridge.org/visit/julianasilvernail

 

 

Music speaks what cannot be expressed, soothes the mind and gives it rest,

heals the heart and makes it whole,

flows from heaven to the soul.

 ~ Anonymous

 

 

Talented teens turn out tunes 

Faith in a Theory
Chris Mast, Tom Sweeney, Ben Brady, and Nick Mast of Faith In A Theory, picture courtesy of Stephanie Uptmor of Imagine It Photography

The Knights of Columbus Hall in Avon rocked with the music of Faith in a Theory (FIAT), a local band, Sunday, March 27 as they played for a sell-out crowd of more than 350 area teens while raising funds for both Smiles For Sophie Forever and the Karen P. Nakon Breast Cancer Foundation of Avon.

 

Chris Mast (bassist), Nick Mast (drummer), Ben Brady (lead guitarist), and Tom Sweeney (guitarist and lead singer) comprise the group whose original alternative rock has "caught the attention of judges at the Tri-C Rock Off at the House of Blues" and TzMR Records of Charlotte, NC. Recently after playing at Peabody's Down Under in Cleveland, the President of 

TzMR Records invited FIAT to play at the tour's finale in Charlotte. The band has also been busy working on and recording their EP, hoping to release it in early May. To celebrate its release, FIAT will be having another hall show at the K of C Hall on May 22.

 

The teens, ranging in grades 9-12 attend three different area high schools --- St. Ignatius, Avon and Avon Lake   ---  and had previously played at a charity event in early March, helping to raise $400 for St. Jude. However, the K of C event was the first time the group performed at an event they planned and organized themselves.

 

Board President, Emily Quayle, and her husband Marc, an Avon K of C member, who daily witness the volunteer work of area adults, were moved by the work and efforts of these teens whose love of music also conveys their faith and love of their fellow man.

 

SFSF greatly appreciates the $340 donation from FIAT's fundraiser which will further the mission of SFSF.

 

Applebee's Dining to Donate benefits SFSF

 applebees

Mark your calendars!   On Thursday, May 19, Applebee's in Avon, Ohio, will donate 15% of your check to Smiles For Sophie Forever.  The offer is valid for both dine-in and curbside carryout orders.  Participants must present the Applebee's flyer to their server, which is available on the SFSF website or by clicking here.  In addition, from  4-9 p.m., a SFSF board member will be at Applebee's with raffle baskets and a 50/50 raffle.

  

While this offer benefits SFSF, Applebee's Community Connection, Dining to Donate, is a nationwide effort to benefit non-profit groups and organizations within the local communities. SFSF congratulates Applebee's for their community service efforts and encourages residents within the Avon area to choose Applebee's for lunch or dinner on May 19 and any other day when home cooking just isn't possible.

 

SFSF grants near $200,000

Since February 1, 2011, the Foundation has helped 16 families and awarded $13,750 in grant money, bringing the total amount of family grants awarded to $149,385. The grand total donated by SFSF, including donations to The Cure Starts Now ($32,000) and St. Jude ($15,000), is $196,385.

Every month, the SFSF Grant Committee approves applications for financial assistance for families of children with brain cancer. As of January 2011, the one-time grants are awarded in the amount of $1000.  The children of the families who received grants in February, March and April are: 

         MacKenna, age 10  - germinoma

         Anonymous, age 5 - craniopharyngioma

         Zavier, age 16 - glioblastoma multiforme IV

         Daniel, age 8 - pilocytic astrocytoma

         Diamond, age 7 - astrocytoma

         Candace, age 6 - D IPG

         Anonymous, age  2 - anaplastic astrocytoma

         Crew, age 2 - neuroblastoma

         Grace, age 7 - meningioma

         Anonymous, age 16 - medulloblastoma

         Travis, age 16 - medulloblastoma

         Dewon, age 5 - passed away Feb 2011, PNET

         Juliana, age 7 - DIPG

         Blake, age 1 - optic glioma

         Ava, age 4 - DIPG

         Anonymous, age 7 - astrocytoma

 

Fifth Annual Golf Outing swings into action

"Fore" Smiles For Sophie Forever

 

Registration for the Fifth Annual SFSF Golf Outing at Atlas Valley Country Club in Grand Blanc, MI, on Monday, August 22, 2011, is now open. Mail-in registrations are being accepted at a cost of $125 per golfer, which includes dinner and prizes. The event, organized by Sophie's Papa, Bob Quayle, of Grand Blanc, MI, is a well-known Michigan fundraiser for SFSF, and continues to draw support from the Michigan connection. Golfers have plenty of time to perfect their games before the event.  Click for more information on the golf outing or to download the registration form.

 

Why SFSF supports St. Jude Hospital 

st. jude logo

SFSF supports St. Jude. Is it simply because that is where Sophie was treated? A good reason, but far from the only reason. Since its inception, SFSF has donated $15,000 to St. Jude, and for three years Board President Emily Quayle has organized and accompanied a SFSF team to Memphis for the annual St. Jude Marathon Weekend in December, raising an additional $11,158 for St. Jude.

 

Besides treating children, regardless of their family's ability to pay, St. Jude also conducts research and gladly shares its findings with doctors and hospitals all over the world.

 

St. Jude is embarking upon a major research project, along with Washington University, entitled the Cancer Genome Project. At a cost of $65 million over three years ($55 million pledged by St. Jude), it is the largest investment to date aimed at understanding the genetic origins of childhood cancer.

 

The project builds on the significant advances in DNA sequencing technology created for the widely-known Human Genome Project which successfully mapped all the genes of human beings. "....Hoping to develop powerful new approaches to diagnose and beat childhood cancer, this research could change everything about childhood cancer," proclaims St. Jude.

 

It's an amazing endeavor; it's a crucial endeavor; it's a worthwhile endeavor. Supporting SFSF is ultimately supporting St. Jude. Supporting St. Jude is supporting its work to find a cure for all childhood cancers.

 

parade of homes save the date

In This Issue
DIPG Spotlight
"Faith in a Theory" Fundraiser
Applebee's Dining to Donate
SFSF Family Grants
SFSF Golf Outing
St Jude Research Project
Parade of Homes
Brain Tumor Awareness Month
SFSF Annual Appeal
Birthday Bash and Dash Planning
Best of the West Voting
ALECPTA's Hardy Party
Riverview C3 Day
Trenton Cheerleading
The Rock Pile

Spread the word, wear grey in May

 may brain tumor awareness

Three years ago this May, the entire month of May was officially recognized by an act of US. Congress as Brain Tumor Awareness Month. Unfortunately, the grey brain tumor awareness ribbon remains little known to many.  Although organizations have been established, conferences and symposiums are held, and brain tumor awareness clothing and supplies are available, the fact remains:  brain tumors are the leading cause of childhood cancer deaths. This May, make a concerted effort to not only raise awareness of brain cancer, but offer hope to brain cancer victims by supporting an organization that is dedicated to finding a cure for the horrible disease that robs children of their lives. SFSF offers a variety of facts and information, as well as a list of viable organizations on its website

 

 

True charity is the desire to be useful to others without thought of recompense.

                               ~ Emanuel Swendenborg

 

March Madness means much to SFSF

 

SFSF joined in the March Madness --- madness about pediatric brain cancer, hoping its supporters would bet on SFSF. With a theme of "hope and fear," the third annual appeal was mailed the first week of April following the Final Four,  to over 2000 supporters in the SFSF database. As in the previous two years, the effort is an outright outreach, appealing to SFSF supporters for monetary donations to support its mission. There is nothing to buy, nothing to sell, nothing to attend, but hopefully a lot to give.

 

The money raised through the appeal has been on the rise, as have the requests for family grants. As of this publication, and in just one month's time, the appeal has garnered $4,095 to SFSF coffers. If the appeal still sits on the refrigerator, please re-visit it, and make your donation today. 

 

SFSF thanks not only the donors, but the Marketing Committee, Shamrock Company, especially Deb Smith and her supervisor, Ellen Moriarty, and all the assembly line volunteers for their efforts in getting the appeal produced and mailed.                 

 

Momentum builds for SFSF
Fourth Annual Bash and Dash
 

 race logo 2011

Two months until race day; time to double the efforts of registering runners, securing corporate sponsors, encouraging individual and team fundraising, while the volunteers behind-the-scenes are organizing and preparing for the Fourth Annual Birthday Bash and Dash, soliciting and collecting Chinese raffle and silent auction items. The kids' activities committee is organizing games and getting prizes.  The concession committee is "cooking" up a menu of items available for purchase at the festivities. The grounds crew is seeking large portable tents and canopies to shelter the various event stations form the weather - the shining sun, of course.  

 

On and off-line registration, guaranteeing registrants a race T-shirt and goody bag is available through June 22 --- $20 for 11 and up and $15 for ages 10 and under. Late registration, $25 for all ages, will be available from June 23 through race day. 

 

This year, all individuals who become a Firecracker Fundraiser and raise a minimum of $100 are guaranteed official race logo items and a chance to win raffle prizes.

 

Second-year Race Director Michelle Polinko encourages all,  "...to begin the Fourth of July with a bang at the Bash and Dash, to become a Firecracker fundraiser, and to help SFSF reach its goal of raising $80,000."  For race details and registration links, visit the SFSF race page.

 

Going for a Best of the West "three-peat"

best of the west 2011
Nicole Stanbery, Andrea Bucci, Kelly Bova, Amanda Clancy and Michelle Polinko work the SFSF display at the Best of the West Expo, April 12, 2011 at LaCentre in Westlake.   

For the third consecutive year, the Smiles For Sophie Birthday Bash and Dash has landed among the top, three finalists in West Shore's live Well Best of the West competition as a contender in the Best Charity Race category. The Race took top honors in 2009 and 2010, and hopes for a three-peat this year. Voting took place at the West Shore Expo at La Centre in Westlake, April 12, 2011. As of press time, results were not available, but will be revealed in the upcoming issue of live Well.

 

SFSF Board members, Emily Quayle, Michelle Polinko, Andrea Bucci, Mari Durbin, Laurann Collins, Kelly Bova, and Nicole Stanbery and race committe members, Amanda Clancy and Tru Pace, were on hand at The Expo to promote The Foundation and the Birthday Bash and Dash, to spread awareness of pediatric brain cancer, and to chat with those in attendance. Besides a display of pictures of many of the children awarded grants, the SFSF "booth" featured pertinent information, SFSF merchandise, and of course, mini cupcakes. SFSF items ---choice of can holder, Frisbee, or tote bag--- were awarded to lucky attendees who entered the drawing. Free SFSF stress balls and bubbles were given to those visiting the display.  SFSF thanks all who stopped at the SFSF table and especially those who made a contribution in the on-site donation jar, adding over $40.00 to the SFSF coffers.

 

SFSF encourages and welcomes all participants to the Fourth Annual Bash and Dash to be held July 4, 2011, ---the day Sophie would have and should have turned eight years old. Celebrate the morning of The Fourth at Walker Road Park, racing for a cure for pediatric brain cancer.

 

ALECPTA sponsors hardy party for SFSF

 

For superheroes and princesses alike, a promise is a promise and ALECPTA (Avon Lake Early Childhood PTA) kept its promise to sponsor a fun-filled event, while raising funds for SFSF, Sunday, March 27, 2011, at The Red Tail Golf Club in Avon.

 
Pre-schoolers and many of their older siblings dressed as Belle, Cinderella, Sleeping Beauty, Superman, Spiderman, Batman and various other princesses and superheroes, enjoyed an afternoon of crafts, balloon artists, dancing ---complete with DJ ---- and of course, pizza, soft drinks, and cupcakes, at ALECPTA's first Princess/Superheroes Party. Over 200 adults and children attended.
 

In addition to planning the entire event, ALECPTA donated the profits of $250 to SFSF. Many SFSF Board members, with their children were on hand to enjoy the party.


Board member Nicole Stanbery sold 50-50 tickets and collected donations, raising an additional $95 for The Foundation.

 

Area high-schoolers highlighted the event, dressed as princesses and superheroes, available for picture-taking.
    

SFSF extends a sincere thank you to Jen Dalman and ALECPTA's children's party committee for not only organizing and sponsoring the affair, but for donating the profits to SFSF.

Princess party
Superheroes and princesses, teenagers and children alike, were in attendance at ALECPTA's party, March 27, 2011 at Red Tail Country Club. Teens: Alyssa Osborn, Sam Laurendeau, Henry Laurendeau, and Ashley Riddle flanked youngsters: Taryn Wilson, Vanessa Baker, Sarah Quayle, and Lauren Anderson.
 

Riverview Community goes casual for SFSF

Riverview logo

Riverview Community School District's C3 (Casual Clothes for a Cause) Day on March 18, 2011 netted $785 for Smiles For Sophie Forever.

 

Every third Friday of the school year, the district employees in Riverview, Michigan, take part in a "dress down" day for a minimum $5.00 donation to a designated charity. Staff members nominate the charities at the beginning of the school year; the nine charities with the greatest number of votes become one of the monthly beneficiaries of the fundraisers. This is the second year that SFSF has won a place among the nine nominated charities. The yearly event began with the Susan G. Komen Pink Ribbon Campaign, held each October.

 

Sophie's grandmother and SFSF secretary retired from the Riverview Community School District in 2007, the year Sophie fought and lost her battle with DIPG. Ironically, Miklaski, a 21-year employee as a high school English teacher, was responsible for organizing the Pink Ribbon campaign and for collecting donations for the other charities as well. 

 

In addition to the staff dress-down, Seitz Middle School took the fundraising day one step further. Students at Seitz paid $1.00 to dress in sweats and/or hats, adding to the total collected.

 

Miklaski, who currently works as a substitute teacher in the district, was invited to give a SFSF presentation to the Quest class at Seitz that day.

 

SFSF greatly appreciates the continuous support from the Riverview Community School District, its faculty, staff, and students.

 

 

 

 

Three cheers for Trenton Cheerleading Team

Trenton Cheer
Melissa Cabauatan, and the Trenton Varsity Cheerleading Team, present Board Secretary Susie Miklaski with an honorary $650 check during half-time at the Trenton Varsity Basketball game, February 24, 2011.

Hip, hip, hooray! The Trenton Cheerleading Team deserves more than applause. The team, under the direction of Melissa Cabauatan and Brooke Lammers, shared the profits of the Downriver League Meet with Smiles For Sophie Forever.

 

A check for $650 was presented to Susan Miklaski, Sophie's grandmother, during half-time activities of the Trenton vs. Taylor Kennedy basketball game on February 24 at Trenton High School. The check represented profits from general admission, league-meet T-shirt sales, concession stand revenue, and a 50-50 drawing. The League meet was hosted by the Trenton Cheer Team on Feb. 10, 2011. 

 

Coach Melissa (McHenry) Cabauatan attended school with Sophie's mother, Emily, for thirteen years, all in the Trenton School District. According to Cabauatan, "I feel it's important to teach the girls that charity work and sharing is an important part of life; and Smiles For Sophie Forever is such a great cause and one that is dear to a dear friend."

 

In addition to their fundraising efforts, the girls also spread awareness of SFSF and its mission by displaying posters and brochures, including SFSF in the program and announcements, and featuring the SFSF rainbow logo on the commemorative League Meet T-shirts.

 

SFSF thanks the Coaches, the Trenton Varsity Cheer Team, their parents, their fans, the THS Athletic Department, and all the participants for their support.

 

SFSF gets a "load" from The Rock Pile

The Rock Pile in Avon has offered to donate 5% of pre-tax purchases to SFSF.  Shoppers need only mention SFSF at check-out to insure this benefit to SFSF. The Rock Pile, an independent garden center carries a variety of decorative outdoor items, bird-feeding needs, as well as supplies for all landscaping projects. The Rock Pileis located at 900 Nagel Road; SFSF graciously thanks The Rock Pile for offering its support to the local community charitable efforts.

Rock Pile logo

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