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Emily's Intro...
Greetings Smiles for Sophie Forever Supporters,
As I sit down to write this introduction for our "winter" newsletter, I find myself wanting desperately to skip ahead to spring. It's not so much that I don't like winter, I just don't like the month of February. And those of you who have followed Sophie's story know that is because February is the month that Sophie was diagnosed. Here in Ohio, like many parts of the country, the ground is covered in snow, just as it was four years ago. And even though that was almost four years ago, I still remember it like yesterday. It's hard to think of something positive to write when all that comes to mind about February is the date of Sophie's diagnosis.
I long for the day when writing this introduction comes easy, and I can share with you the news that a cure for pediatric brain cancer has been found. Certainly all that you read about below in this newsletter is news worthy, but the best news of all would be that I don't need to write this introduction at all because a cure had been found!
While I struggle with missing Sophie and finding the words to inspire your support, there is one thing that comes easy. And that is my desire to express how grateful I am for those of you who do inspire me. I am inspired by the work of the people mentioned below, as well as the work of the SFSF Board of Directors and all of you reading this now who have supported, and continue to support, our efforts in fighting the war against cancer.
I applaud those individuals and companies that are mentioned in this edition because I know how hard it can be to make time for "extra" things. So often people ask me what they can do to help, and sometimes I am at a loss for words because I have a hard time "asking" for help, so when people help without being asked, that is simply the best gift. I am grateful for those of you who make the time to fundraise and to take it upon yourselves to help us make a difference. I am certain that as you read this edition of Smiles for the Season, you too will be inspired by those who go above and beyond. As we continue to receive requests for grants at a rate that is increasingly harder to keep up with, we appreciate those of you who keep our funds coming in. Just as many families have expressed their relief to us when they receive our check for assistance, we too are relieved when we receive word of these generous acts of kindness and support.
We look forward to the spring and our annual fundraising events that will happen as the weather gets warm. Some things will never change, I suppose, and although in February I will forever be reminded of Sophie's entrance into the world of cancer, I can also look forward to the warmth and love from those of you who brighten my day by showing your support.
Always grateful,
Emily
SFSF Board President and Sophie's Mommy
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 DIPG Spotlight: Tiara Caleb
Meet Tiara Caleb, such a fitting name for a 5-year-old, happy-go-lucky kindergartner who loves Disney princesses and just attended "Disney on Ice: Princess Wishes" at Madison Square Garden. Tiara lives with her mother, Nadine Parsons, in New York City and loves the excitement New York offers. Tiara was diagnosed with a slow-growing, stage 2 brainstem glioma in February, 2010. Her mother noticed Tiara tilting her head, and Tiara complained of a sore neck. A CT scan, an MRI, and a biopsy confirmed the tumor's presence and condition. Her treatment began with a chemotherapy regimen of Carboplatin, Vincristine, and Temodar. An illness in March hospitalized Tiara; however, an early May MRI showed no tumor growth.
Tiara enjoyed a wonderful summer filled with many activities including a visit to Playland Six Flags in New Jersey and two months of day camp at Camp Sunrise in Long Island, a camp for children with cancer. Summer sunshine was good for Tiara, and she did well throughout the summer, enjoying her last summer before the official beginning of school.
In August, a persistent cold, balance problems, and continual weight loss prompted another MRI. Her tumor had grown. A shunt was ordered to reduce fluid on her brain and Tiara was placed on Decadron to reduce swelling. The doctors confirmed Tiara's official diagnosis: DIPG.
With kindergarten coming soon, Tiara's mother, Nadine Parsons, opted for alternative treatments and started Tiara on Ruta Graveoleons and Calc Phosphorica, but by October, the doctors at Children's Hospital at Montefiore determined radiation as the next step in her treatment. Second opinions at Memorial Sloan Kettering Cancer Center and Children's Presbyterian Hospital all gave the same advice: radiation.
Thanks to the Children's Brain Tumor Foundation Tiara enjoyed the Big Apple Circus. Tiara and her mom also attended a performance of "Yo Gabba, Gabba, Live" at Radio City Music Hall. October 18 marked her first day of radiation and Tiara continued to enjoy the fall season with a fall family day at Camp Sunrise, a Halloween party at Children's Hospital at Montefiore (where Tiara is being treated) and traditional trick-or-treating.
During the weeks of radiation, Tiara remained in good spirits, although she dreaded the hospital visits, the needle pokes, and not being able to have breakfast. She kept busy with school, anticipation of Thanksgiving, and preparation for her Make-A-Wish cruise in the Caribbean.
On December 1, Tiara completed her six weeks and three days of radiation; on December 12 she set sail with her grandmother and mom for sunshine, warmth, and reuniting with family. On Barbados, she visited with aunts, uncles, and cousins. In St. Lucia, St. Maarten, and St. Croix she shopped, swam, sunbathed, built sand castles, and simply enjoyed summer weather in December. In Antigua, she was reunited with her great-grandmother, grandmother, father, more aunts, uncles, and cousins. Meeting the ship's captain and blowing the ship's horn almost paralleled her ride to the airport in a stretch limo. Dressing up for the formal, cruise dinners perfectly matched being a princess.
Following the cruise, Tiara experienced some leg pain, but X-rays revealed no bone damage. A post-radiation MRI, scheduled for December 30, was postponed due to a winter blizzard.
Around mid-January Tiara began experiencing more headaches, now attributed to the lowering of her steroid dosage. Fortunately, her school nurse continually comes to her rescue with Tylenol. Tiara continues to be energetic, happy, and loving. Tiara loves her mom, going to church, and reading books.
Tiara's mom happily reported that the re-scheduled MRI done on January 26 indicated tumor shrinkage of "1 cm all around!"
Follow Tiara's journey at www.caringbridge.org/visit/tiaracaleb |
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"Love is what you've been
through with somebody."
~ J.Thurber
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SFSF Grant recipient's aunt "pays it forward"
 Rhonda Wiley, promoter of Crush Wine Lounge, in Woodlands, Texas, has graciously donated $800 to Smiles For Sophie Forever, in memory of her niece, Delaney Starcher, who passed away from a DIPG on December 1, 2009. Rhonda organized and held a fundraising evening of fun and festivities at Crush Wine, November 1, 2010.
The early evening reception was followed by a rooftop party, complete with live music by Ramon, along with happy-hour beverage and food prices. A Chinese auction and gift-basket raffle added excitement to the event and increased the money raised.
Rhonda believes in "pay-it-forward" and "is blessed to be involved with an organization that constantly works to give back to the community." Her dear niece Delaney received three family grants from SFSF in 2009, and Rhonda selected SFSF as the recipient of her fundraising efforts. She believes in "increasing the quality of young lives affected by this monstrous disease (DIPG) which took our little 'Delaneybug' in 2009."
Delaney was diagnosed on October 8, 2008, at the age of four and one-half; after fighting a courageous battle, she "earned her beautiful green Angel Wings" at just five years, 8 months old.
Aunt Rhonda hopes to sponsor yearly fundraisers to support SFSF and to keep Delaney's legacy alive. |
Disney's Goofy challenge benefits a great cause
Not a thing was "goofy" about Brian Gilpatrick's fundraising efforts for SFSF, except his method --- running in Walt Disney World's Race and a Half Challenge, Jan. 8-9, 2011, at Disney World in Orlando.
Brian raised more than $4000, surpassing his goal of $3930 or $100 a mile. Most would find the thought of running 39.3 miles in two, consecutive days not only goofy, but insane. However, for Brian, his wife Kendra, and the 4500+ other finishers, it was not only a goofy challenge, but also a grand opportunity to raise funds for their favorite charities. And of course, The Gilpatricks chose Smiles For Sophie Forever as their favorite charity. Kendra was the inspiration behind the running craze which began last year when both she and Brian ran the Disney Marathon; since then it's been a family affair, with even their daughters joining in the running.
The Goofy Challenge, in its sixth year, consists of a half marathon on Day 1 (13.1 miles) and a full marathon (26.2 miles) on Day 2. And, just for the "fun of it," Brian added one additional warm-up race, a father/daughter 5k race, which occurred the day before!
Brian, whose hometown is Trenton, Michigan, was SFSF Board President Emily Quayle's classmate at Trenton High School. He was also Emily's sister's classmate at the US Air Force Academy in Colorado Springs where they shared a sponsor. Brian and his sister Amy played hockey in Trenton, along with Emily's brother Charly. Brian's parents, Dennis and Claudia, shared many cold mornings, days, and evenings at the rink with Emily's parents. Clearly, Brian and his family have long-standing ties to Emily's family.
"For me, SFSF was the perfect choice for several reasons. It is not only a foundation established by a long-time family friend, but is also a foundation committed to helping those who are dealing with unthinkable circumstances, the diagnosis of terminal brain cancer," wrote Brian on his fundraising page.
Brian finished the half marathon meeting his personal best of 1:52; he set a new personal record for the marathon with a time of 3:52 --- 25 minutes faster than his former time.
"I guess you could say that I felt as if Sophie was smiling down on me during the races....Crossing the finish line...knowing that we surpassed our fundraising goal, realizing the potential impacts of the effort, and setting a new personal best was truly an amazing feeling." |
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"Nobody has ever measured, even poets,
how much a heart can hold."
~Zelda Fitzgerald |
"Encana Cares" about Childhood Cancer
In late December, just when SFSF funds were getting low, and more family grant requests were coming in, an $8000+ check from Encana Corporation appeared in Smiles For Sophie Forever's mailbox. The generous amount represented donations and pledges of Encana employees, matched dollar for dollar by Encana, as a part of its "Encana Cares" program.
SFSF Board President Emily Quayle's brother, Charly Miklaski, is employed by Encana in their Dallas office. A three -year employee, Charly is a Completions Engineer. Charly's annual donations to SFSF brought SFSF to the forefront among Encana's employees last September when SFSF was featured on the front page of Encana's Intranet website as part of its annual "Encana Cares" campaign. And when Charly and a group of his co-workers earmarked SFSF as their charity of choice in Encana's Charity Chili Cook-Off last September, SFSF was no stranger to the chili-tasters.
In addition to Charly's annual donation, other Encana employees have also chosen to donate to SFSF. Thanks to Shanna Brown, Amanda Glass, Bruce Harwell, Jessica Huprich, Kim Stevens, and two other anonymous donors for choosing SFSF as their charity of choice for the "Encana Cares" program.
Encana, one of North America's leading independent natural gas producers with its US headquarters in Denver, is no stranger to corporate giving. Annually, Encana contributes one percent of pre-tax profits back to the communities in which the company and its employees live and work.
"Encana Cares" is an employee-driven program where cash gifts or pledges are matched up to $25,000 per employee, per year. Administrative costs are covered by Encana so as to guarantee that 100% of employee donations go directly to the charity of their choice. The enrollment program is held each October, and employees are allowed to make their donations over 24 pay periods throughout the year.
In November, 2009, at the completion of its annual employee giving campaign, Encana had raised over $1.32 million for charity; a new record for the company's US division.
SFSF thanks Encana and its employees for their generous donation which will be used to further its three-fold mission of helping families of childhood brain-cancer victims, supporting brain cancer research, and spreading awareness of pediatric brain cancer. |
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SFSF grants surpass $180,000
Every month, the SFSF Grant Committee approves applications for financial assistance for families of children with brain cancer. Grants are awarded in the amount of $1000.
Since November 1, 2010, the Foundation has helped 21 families and awarded $18,500 in grant money, bringing the total amount of family grants awarded to $134,635. The grand total donated by SFSF, including donations to The Cure Starts Now ($32,000) and St. Jude ($15,000), is $181,635.
Shawn Green, VP of Giving, accepts new applications for grants on a continual basis. Families with children diagnosed with brain cancer who would like to apply for financial assistance should click here to download the application criteria and then contact Shawn by email to request an application.
SFSF understands the burden that weighs heavy on the hearts and minds of families victimized by this illness and hopes this financial support eases that burden.
The children of the families who received grants in November and December, 2010 and January, 2011 are:
- Austin, age 13 - pineal germinoma
- Adam, age 8 - metastatic medulloblastoma
- Quandarius, age 8 - apienoma tumor
- Anonymous, age 5 - medulloblastoma
- Anonymous, age 8 - pilomyxoid astrocytoma
- Juliana, age 8 - DIPG
- Trenton, age 10 - glioblastoma multiforme
- Ananda, age 9 - DIPG
- Maisa, age 6 - optical pathway glioma
- Jayden, age 4 - PNET
- Jack, age 14 - medulloblastoma
- Jayla, age 9 - ependymoblastoma
- Matthew, age 12 - ganglioglioma
- Bridget, age 7 - optical pathway glioma
- Bryon, age 4 - optic glioma
- Jackson, age 6 - passed away Nov 2010, DIPG
- Kaden, age 6 - pilocytic astrocytoma
- Luke, age 3 - ganglioglioma
- Lisseth, age 5 - DIPG
- Ewen, age 5 - pilocytic astrocytoma
- Clifford, age 8 - astrocytoma
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"Love would never be a promise of a rose garden
unless it is showered with light of faith,
water of sincerity and air of passion."
~Author Unknown |
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WGAR Radiothon
features Sophie's story
WGAR, 99.5, Cleveland's own country station, sponsored yet another Radiothon to benefit St. Jude Hospital in Memphis, Dec 9-10, at Midway Mall in Elyria. And once again, SFSF Board President Emily Quayle was there to tell Sophie's story, in between stuffing envelopes with mailings for call-in donors.
WGAR is a member of Country Cares for St. Jude Kids, one of the most successful radio fundraising programs in America. Partnered with more than 200 country stations across the nation, the Radiothon give listeners the opportunity to learn about the life-saving work of St. Jude, hear patient stories, make donations, and become Partners in Hope, i.e., monthly donors. Since the program began in 1989, more than $354 million has been pledged to St. Jude.
Partners in Hope and volunteers received complimentary T-shirts, which fittingly sported a rainbow. Stay tuned to WGAR for upcoming events supporting St. Jude. |
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"The most important things
are the hardest to say,
because words diminsh them."
~ Stephen King |
Snow doesn't deter race planning
While most are shoveling the snow, sledding, skiing, or curled up with a good book, the SFSF Race Committee members are busy making preliminary plans for the fourth annual SFSF Birthday Bash & Dash. Securing corporate sponsors and gift-in-kind donations, contacting and organizing volunteers, writing letters, and taking care of logistics are among some of their tasks. The list of "needs" and "wants" is great. Anyone willing to join the committee, volunteer their services, present new ideas, or lighten the load of the tried and true should contact second-year race director, Michelle Polinko, at chellebar@aol.com. The next race-planning meeting will be Wednesday, February 17, at 7:00 p.m. at Rio Cafe on Walker Rd. Many hands make for light work. |
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SFSF Team makes record donation
to St. Jude Hospital in Memphis
For the third consecutive year, Board President Emily Quayle organized and accompanied a SFSF Team to Memphis for the St. Jude Marathon Weekend, Dec. 3-5, 2010. This year Emily and former Board member and two-year race director Kristin Van Euwen completed the half marathon; a first half marathon for Emily, even after breaking her ankle back in March. Susie Miklaski, Board secretary, and Leslie Farmer, Emily's sister-in-law, ran the Grizzlies House 5K.
Along with the $5000 SFSF donation, the team raised $12,818 for St. Jude, with each team member registered as a St. Jude hero. The team was among the top 30 team fundraisers, and Emily was among the top 50 individual fundraisers.
The four-some not only created individual, on-line donation pages, but also sponsored small-scale fundraisers, among them: a euchre tournament, a bunco party, a high school Halloween-gram sale, and a Thirty-one home and on-line party.
The St. Jude Marathon, in its ninth year, is held the first weekend in December and attracts over 16,000 runners and walkers. Registration for the three races has been sold out for the past three years and closes well before the event.
This year, the weekend event raised over $3 million to support St. Jude, an amount that seems enormous, but pales in comparison to St. Jude's daily costs of over one million dollars. Founded by the late entertainer Danny Thomas, St. Jude freely shares its discoveries with scientific and medical communities around the world. St. Jude is the only pediatric cancer research center where families never pay for treatment not covered by insurance. No child is ever denied treatment because of a family's inability to pay.
This year the team toured St. Jude Hospital, shopped at the Health and Fitness Expo, enjoyed the inspirational program and great food at Pasta Night at the Memphis Cook Convention Center, and took advantage of the hospitality in The Heroes Lounge at The Double Tree Hotel.
Emily, Kristin, Leslie, and Susie were delighted to be among the 4000 St. Jude Heroes participating in the weekend's activities.
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SFSF website sports bright look,
creates easy access
With the new year comes new updates for the SFSF website. VP of Awareness Sarah Smith, is working with a new web site designer and manager, John Kepko of Emerald Coast Webs, who has created a more-easily navigable site, hoping to make it one in which all SFSF background, information, news and updates are just a click away. The bright rainbow colors continue to shine throughout the site, and not only parallel the Smiles For Sophie Forever logo, but also give the site the freshness and vitality that depicts The Foundation. Visit the new site --- which is still being updated --- www.smilesforsophieforever.org. Comments, concerns, and, yes, even critiques are welcome. Email Sarah at sarah@smilesforsophieforever.org. A big thank you to Omar Trevino for all the work he has done with the website from its very beginnings until now! |
SFSF gives $10,000 to TCSN
In keeping with its mission "to support viable pediatric brain cancer research," the SFSF Board voted to donate $10,000 to The Cure Starts Now (TCSN) to fund upcoming research grants.
TCSN will be hosting a two-day symposium, at Cincinnati Children's Hospital Medical Center, March 18-19, 2011. The event, sponsored by several hospitals, organizations, and foundations, "represents a hybrid of an innovative basic science meeting and a clinical research conference.... A state of the science document will be developed as a result of this initiative and dedicated funding shall be created for symposium initiatives... (our) central goal will be to form and fund new collaborations and highly innovative bench to bedside and back clinical trials." There is no cost to attend. For more information or to register, visit www.dipg.org.
Culminating the symposium will be TCSN's annual fundraiser, "Once in a Lifetime Gala," at the Duke Energy Convention Center, March 19. The gala offers food, a variety of silent auction items, and once-in-a-lifetime experiences through the live auction.
For tickets and additional information, visit www.thecurestartsnow.org.
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Doner Becomes Donor
For the second consecutive year, Doner Advertising's Cleveland office employees opted for a smaller, less formal holiday party and donated the remaining party budget to charity. Employees, including SFSF Board Member Stacey Green, were given the opportunity to nominate and then vote for their favorite non-profit organization. In lieu of a lavish venue, trendy hors d'ouevres and open bar the 60+ Doner employees partied at the office with lighter fare and reserved $2,000 to send to charity. A total of twelve charitable organizations were nominated and after votes were tallied, there was a four-way tie including Smiles for Sophie Forever. All four charities were given one-fourth of the money, each receiving $500. SFSF thanks its new donor, Doner! |
SFSF Board welcomes new members
SFSF Board welcomed three new members to its volunteer Board of Directors at the January meeting. Keith Dando, Robin Somers, and Scott Stanbery have graciously offered to serve in an advisory and working capacity.
Keith, a neighbor of Board members, Kelly and Mike Bova, has been helping with SFSF from the sidelines and wanted to become involved on a higher level.
Scott, the husband of Board member Nicole Stanberry, joins his wife, as yet another proof of teamwork in marriage, making seven husband-wife couples serving on the Board.
Robin Somers, a GED instructor in the Lakewood School District, was "moved by the help given to her daughter's best friend, Derric Williams," a DIPG victim who passed away in 2009.
SFSF Board extends a sincere thank-you to retiring Board members: Mike Collins, Brian and Tamara Ekis, Scott Gedeon, Jeff and Katy Grove, and Peter Van Euwen. SFSF greatly appreciates their three years of volunteer service, dedication, and critical input to The Foundation. SFSF hopes that the three years of service and dedication to SFSF will be rewarded 300 times 3.
At the January meeting, several changes among the officer and committee roles were made. Replacing the Groves, as co-treasurers will be Andrea Bucci and Marc Quayle. Serving
as Marketing co- chairs are Stacey Green and Sarah Smith; managing the SFSF store will be Nicole Stanbery; accepting duties of data base managers will be Elizabeth Gedeon and Kim Walters; and taking full responsibility for writing and producing the e-newsletter will be Susie Miklaski and Sarah Smith. |
Stay connected
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