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| | Sophie was shining down as Board Treasurer Kristin Stobe, who completed her first ever half marathon, joined up with Emily at the finish line after her marathon. |
Emily's Intro...
It's finally winter here in the mid west. Even though this newsletter comes to you after Christmas, somehow it doesn't feel later than usual considering the mild temps we have had up until now.
We are just half way into January, yet the St. Jude Memphis Marathon week end of December 5 feels like ages ago. Physically our team has all recovered, but mentally, I am still in awe about the success of the week end in terms of our fundraising accomplishments. I couldn't be more proud of our team and its efforts. This year was a record-breaking year for Team SFSF, having raised an amazing $92,632 (see related article). Many thanks to all of our supporters and donors; we are blessed to be able to help such a great place!
In the winter months, we aren't as busy with foundation-sponsored events, but we are blessed to have the support of many others who bring in some funds for us. The articles below show the great work that supporters are doing for our benefit, and right now, these funds are needed more than ever. In 2015 we received more grant applications than any other year, and awarded $113,000 to families in just one year, bringing our grand total of funds awarded to $675,815 in just eight years! While we are happy and honored to help these families who are in the trenches, fighting with their kids who have brain cancer, we are sad to say that the money going out could quickly surpass the money coming in. It pains us to say that we had to freeze our application process temporarily while waiting for our finances to stabilize. Clearly the number of children diagnosed with brain cancer is increasing, and so is the need for assistance. So many families contact us in dire need of help, and tell us there are just not many organizations that provide financial assistance. I've always said that a cure is our ultimate goal, and it remains this way. We continue to support the DIPG Collaborative, its members and all of its research projects. Some very promising studies have been funded, and research into DIPG is making huge strides. We are proud to be a small part of that, but having been through a diagnosis and the death of Sophie, we know how much support of friends, family and the community means. To know there are families and children that don't have this support is heart-breaking.
I share all of this with you, in hopes you will be inspired to share our story, hold a fundraiser, or solicit a corporate donor on our behalf. For some of the families we help, we are their only hope of receiving help for basic living needs, while they forgo salaries in order to care for their child. Our foundation has always been run by volunteers. We have minimal expenses and 94 cents of every dollar goes towards meeting our mission. We have realized that in order to continue to help families across the country, as well as to fund research and support St. Jude, we need to broaden our reach in terms of bringing in funds. I pray that this newsletter might reach the right person who can help us to continue our mission so that we can continue to provide help to every single family that needs it, in addition to funding research through contributions to the DIPG Collaborative and St. Jude. Please do not hesitate to contact me with ideas of any kind. You can reach me by email at emily@smilesforsophieforever.org
It's hard to imagine summer happening any time soon, but when you receive the next newsletter, we will be in the throes of planning our 9th Annual Bash & Dash. Oh my gosh, it's hard to believe we have been doing this for almost nine years, and even harder to believe that this year will be nine years without Sophie. The race is the biggest fundraiser of The Foundation, and we are always looking for ways to improve the event for the participants, as well as ways to bring in more funds. We welcome help in planning and organizing the event. If you would like to help in any way, --- we have jobs of all sizes, and some can be done from any location --- please reach out to me.
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| | 12 Team SFSF members joined up with Emily at mile 23.5 to run in to the finish with her. |
I wish nothing but health and happiness for you and your families in the New Year. I pray especially for all the families battling cancer of any kind, and for those families who have experienced loss. I pray too for the families who are blessed to spend 2016 with their child, with or without knowing they will not live to see 2017. I pray that this year will be the year that progress will be made in the fight against childhood cancer, and I thank you for doing your part in trying to make this prayer come true.
Oh, I almost forgot... please, if you are able, support our annual appeal which should be arriving in your mailboxes in the very near future.
Blessing to you in 2016,
Emily Quayle
SFSF Board President
Sophie, Sarah, and Marie's Mommy
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Team SFSF breaks fundraising record at St. Jude
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| | Team SFSF at the St. Jude Heroes Pasta Party on Friday night. |
The 2015 Team SFSF for the St. Jude Marathon Weekend, Dec.4-5, 2015 raised a whopping $92,632 --- a team record --- surpassing its original $70,000 goal. In its eighth year of participation, Team SFSF ranked among the top ten fundraising teams, although fewer in number than some of the other top teams. To date, SFSF, along with individual fundraising by members of the eight teams, has raised $278,379 for St. Jude, where Sophie was treated in 2007, fulfilling part of its tri-fold mission.
Team SFSF, 38-strong, hailing from nine states --- Colorado, Florida, Illinois, Michigan, Ohio, Pennsylvania, Texas, Virginia, and Wisconsin --- was represented in three events: the 5K, the half marathon, and the full marathon, with the majority of team members running the half. The 27, veteran members recruited 11, first-time participants to the 2015 Team SFSF, ranging in age from 12-69. The majority of the team registered as St. Jude Heroes, committing to minimum fundraising goals.
The weekend included a tour of St. Jude Hospital, packet pick-up, shopping at the awesome Expo (with vouchers from St. Jude for St. Jude Heroes), a hearty pasta dinner, an inspirational program, crack-of-dawn starts, the RACES, lunch and celebrations in the Heroes' Lounge, and a relaxing dinner at Local Gastro Pub, complete with a surprise 40th birthday cake for team captain Emily Quayle who completed her third full marathon, and finally some bittersweet farewells on Sunday. The whirlwind weekend was truly a moving and memorable experience.
Besides the record-breaking fundraising, Team SFSF boasts of a 2:53:11, eighth place overall finish and a second place age-group (35-39) finish for full marathoner Seth Cooke, and a 1:12:31, tenth place, age group (11-15) finish for half marathoner and newcomer Ryce Federle.
Moreover, several of 2014 Team SFSF members appeared in the 2015 race program, a pleasant surprise for all.
The 2015 Team SFSF included: Angela Allen, Kip Blackwell, Rebecca Blackwell, Scarlett Brianey, Seth Cooke, Leslie Deebach, Kathy Farquhar, Tate Farquhar, Ryce Federle, Leigh Ann Frederick, Evan Gillen, Rachelle Gillen, Keri Haibach, Renee Haveman, Lauren Hicks, Danielle Iaquinta, Kelle Ilitch, Travis Ilitch, Doug Karn, Misty Karn, Megan Koch, Trina Lengyel, Charity McDonald, Mark McDonald, Charly Miklaski, Susie Miklaski, Denise Nemeth, Dana Nicklas, Meghan O'Brien, Kristin Paycheck, Emily Quayle, Jennifer Slater, Katie Slater, Sarah Smith, Nina Stanossek, Kristin Stobe, Heather Tinsley, and Amy Wilson.
SFSF thanks the veteran participants, the newcomers, the fundraisers, and of course, all those who donated to Team SFSF. A special thanks goes to Doug and Misty Karn. whose employer, BrassCraft, matched her fundraising total and to Meghan O'Brien, who due to family commitments, were all unable to travel to Memphis for the weekend.
Team captain Emily Quayle says, "Hope to see you all next year."
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| | Some of the Team SFSF members with the St Jude statue in front of the hospital after the St Jude tour. |
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Soon to arrive in the mailboxes of over 2500 SFSF supporters will be the 2016 SFSF Eighth Annual Appeal. "With a song in our heart," the Appeal is "music to our ears," and emphasizes Sophie's love of music and features all the reasons to play, pause, fast forward, repeat, and even stop the music, but never to eject our mission.
With a song in your heart, please support this major SFSF fundraising campaign. SFSF hopes to exceed the $13,206.74 donated in the 2015 campaign.
"Some days there won't be a song in your heart, sing any way."
~ Emory Austin
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GLC donates to SFSF
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| | Kayla Hussein and Avery Webb present Susie Miklaski (center) with card and money raised by the GLC at Seitz Middle School. |
Seventeen-strong, but with the strength of 170, the Girls Leadership Club (GLC), at Seitz Middle School in Riverview, MI, under the guidance of Ms. Bernadette Seim-Barnes, counselor, and Mrs. Carole Vettrus, computer teacher, donated $532.92 to Smiles For Sophie Forever, fulfilling its mission of doing charitable works and serving community needs. Not only did they give $200 of their money raised from various fundraisers, but they also sponsored a dress-down day on Friday, December 18, 2015, the last half-day of school before the beginning of the Christmas Break, bringing the total donation to the $500+ mark. The original, district-wide Casual Clothes for a Cause Day (C3 Day), earmarked for SFSF, was scheduled for Dec.18, but was changed to Dec. 11, putting a little wrench in the girls plans. (see C3.)
Nonetheless the girls decided to follow through with their original plan of a SFSF dress-down day for the last day of Spirit Week at Seitz. Both the Seitz teachers and the student body, for the second, consecutive Friday, culminated the week's activities, in the true spirit of the season, by donating once again to SFSF.
The Club, run entirely by its members, makes all its own financial decisions and voted to donate the money to SFSF, presenting the envelope, stuffed with cash, along with a homemade card to Mrs. Susie Miklaski, on Monday, January 4, 2016, while she was substitute teaching at Seitz.
"It was indeed an honor and a surprise. I am so humbled by the donation," remarked Mrs. Miklaski, who knows the Seitz students only as a substitute teacher. "The support of the Riverview community has been outstanding, and what is so touching, is that many of the students at Seitz were born in 2003, the year Sophie was born. It is so hard to imagine that our precious Sophie could be among the girls of this age-group, blossoming into such loving and giving women. To just say 'thank you' is not enough."
The GLC is no stranger to both community service and fundraising, and its efforts are well-known, having participated in Riverview's Relay for Life at Young Patriot's Park, for the past five years, last year raising over $6000. The girls also sponsor bake sales at all Parent-Teacher conferences. During the Christmas season they visited at Riverview Terrace, a nursing and rehabilitation facility, where they made Christmas crafts with the residents. A Valentine's Day Decorate-a- Locker, is currently in its fundraising plans.
SFSF thanks GLC, Ms. Seim-Barnes, Mrs. Vettrus, and the students and staff of Seitz for their generosity and kindness.
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Snowflakes are like kisses
sent down from heaven.
~ Author Unknown
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Pengelly Family Includes SFSF in memorials
On Nov.15, 2015, the Pengelly Family --- Susan, Michael, and Kristen, wife, son, and daughter --- lost their beloved husband and dad, Michael Lee Pengelly to the ravages of cancer.
Before his passing, Mike clearly expressed his wish that memorial donations in his honor be earmarked for SFSF and for the Detroit Rescue Mission. For the past eight years, Mike has continually supported the fundraising efforts of Frank and Susie Miklaski, both for SFSF and St. Jude. Residents of Trenton, friends of the Miklaskis, "Boat People," and co-workers of Frank in the Woodhaven School District, the Pengellys retired several years ago, but continued to volunteer with the reading recovery programs in Detroit Public Schools, no strangers to the difficulties children encounter.
To date, SFSF has received $1855 in memorial donations from the Pengelly Family. Sadly Susan Pengelly passed away, also from cancer, on December 13, 2015, just three weeks after Mike's passing.
SFSF expresses deep sympathy to Mike and Kristen and much gratitude to The Pengelly Family for their generosity. SFSF believes that Sophie met both Mike and Susie at Heaven's Gate, and today they are all enjoying the beauty of health and happiness.
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| | Kristen, Mike, Susie and Mike Pengelly |
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Upcoming and in the planning stages
Trenton High School Women's Soccer Booster Club recently contacted Board President Emily Quayle with exciting news about sharing the profits of its annual Charity Game with SFSF.
Emily is a 1993 graduate of Trenton High School, in Trenton, Michigan, and she too was involved in high school sports: swimming and volleyball, and is honored that once again her alma mater is planning yet another fundraiser for SFSF.
In a letter from Bill Wilson, club vice president, Emily was not only informed of the April 20, 2016 Charity Soccer Game at Trenton High School, but was also offered kind thoughts about The Foundation and the work it has accomplished in Sophie's memory.
According to Bill Wilson, the Charity Game is aimed at "helping fund research to find a cure for DIPG," by donating to SFSF and ChadTough, the organization established in memory of 5-year-old Chad Carr, grandson of former Michigan football coach, Lloyd Carr. Chadpassed away late, last November from DIPG.
The game, against Gibraltar's Carlson High School, on April 20, 2016, at 7:00pm, is sure to attract many Downriver fans.
SFSF thanks the Women's Soccer Booster Club and encourages friends, family, and soccer fans, and supporters to attend.
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| SFSF giving surpasses $675,000
Since September 2015, the Foundation has helped 31 families and awarded $31,000 in grant money, bringing the total amount of family grants awarded to $503,253. The grand total donated by SFSF, including donations to The Cure Starts Now ($82,000) and St. Jude ($90,562), is $675,815.
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. As fundraising allows, SFSF plans to resume awarding family grants in February 2016. The children of the families who received grants in September, October, November and December 2015 are:
- Anonymous, age 10 - pineoblastoma
- Anonymous, age11 - glioblastoma
- Abraham, age 15 - medulloblastoma
- Anonymous, age 13 - astroblastoma
- Dru, age 15 - medulloblastoma
- Landon, age 3 - medulloblastoma
- Natavia, age 4 - DIPG
- Camden, age 5 - anaplastic medulloblastoma
- Addyson, age 7 - multi nodular pilomyxoid astrocytoma
- Mackenzie, age 11 - cordoma
- Anonymous, age 4 - astrocytoma
- Anonymous, age 9 - glioblastoma
- Keira, age 9 - pilomyxoid astrocytoma
- Abigail, age 16 - ATRT
- Emili, age 1 - ETANTR
- Maribel, age 17 - ependymoma
- Masi, age 17 - CNS (NGGCT)
- Eden, age 2 - ependymoma
- Ashley, age 17 - medulloblastoma
- Adyn, age 6 - passed away from a malignant embryonal tumor
- Aubree, age 8 - low grade glioma
- Roszetta, age 16 - pineoblastoma
- Michelle, age 20 - medulloblastoma
- Mark, age 17 - medulloblastoma
- Lamar, age 3 - desmoplastic nodular medulloblastoma
- My'vel, age 5 - medulloblastoma
- Anonymous, age 16 - medulloblastoma
- Kaydyn, age 8 - pilocytic astrocytoma
- Asiana, age 12 - glioblastoma multiforme grade IV
- Miya, age 5 - anaplastic ependymoma
- Leon, age 14 - optic nerve glioma
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Winter is on my head,
but eternal spring is in my heart.
~ Victor Hugo
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The longest day...(of golfing)
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| | Ryan Brown on one of the last holes of the day, Catawaba Island Club. |
The Ohio Chapter of the Summer Solstice Foundation's golf outing, on the longest day of the year, resulted in the largest, non-SFSF-sponsored, cash donation in 2015 for SFSF --- a generous $5631.26. Receiving the donation on Oct.27, 2015, long before the shortest day of the year, was both a great and welcome surprise for SFSF.
The event, held at Catawaba Island Club on Catawaba Island in eastern Lake Erie on June 19, 2015, involved 28 golfers from the Cleveland area who played 54 holes of golf (from sun up to sun down) in the Summer Solstice Outing to raise funds for charities of their choice; eight golfers had chosen SFSF as their benefactor.
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. That original foursome began a foundation which has raised over $200,000 in less than five years.
Avon Lake resident Ryan Brown established the Ohio outing in 2013. Before the fundraiser Ryan claimed that he wanted "to raise funds for a local charity that impacts the community." SFSF knows Ryan completed his mission! Ryan chose SFSF this year after his wife Katie sponsored a yoga fundraiser last fall at Fit Me Up to benefit SFSF. Sharing Sophie's story and the mission of SFSF was convincing enough for Ryan.
Joining Ryan were area residents and avid golfers: Kevin Ciere, Matthew Kennedy, Shawn McCormick, Michael O'Donnell, Mike Ramella, Greg Robinson, and Tim Weyer.
As the vice-president of Epic Health services, a pediatric home health care company, "I see first-hand the impact medical challenges can pose to families and feel strongly about supporting these families and caregivers. I am honored to support SFSF and look forward to becoming more involved in The Foundation," said Ryan.
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If we had no winter, the spring would not be so pleasant; if we did not sometimes taste of adversity, prosperity would not be so welcome.
~ Anne Bradstreet
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Annual Shopping Extravaganza benefits SFSF
For the third, consecutive year, SFSF supporters, friends, and family were afforded the opportunity for early Christmas shopping at the Shopping Extravaganza at Holy Spirit Church, on Saturday, November 14, 2015.
Proceeds from the event --- $2,730.74 --- organized again this year by former SFSF Board member Kristin Van Euwen, featured over 30 vendors, a bake sale, the SFSF gift store, a Chinese raffle, and a pizza lunch.
The event, all under one roof, featured nationally-known companies, such as Thirty-One, Origami Owl, KEEP Collective, Wildtree, Arbonne, Tastefully Simple, Scentsy, Mary Kay, Jamberry, Rodan and Fields, Stella and Dot and Pampered Chef, as well as many locally-talented and entrepreneurial individuals, all guaranteeing delivery of goods in time for Christmas gift-giving.
Adding to the profits was a $500 donation from Kohl's, a part of its Kohl's Cares program which makes the donation if at least five Kohl's employees volunteer for a two-hour shift at charitable fundraisers.
SFSF thanks Kristin, Kohl's, the volunteers, the bakers, the businesses, and most of all those in attendance. This year's profits were up 18% from last year's event.
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| | Some of the great raffle prizes donated by vendors that were up for grabs for all attendees. |
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On the right foot
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| | Emily and Marc Quayle with the Mizuno rep and Fleet Feet employees. |
Board President Emily Quayle was honored at Fleet Feet Sports in Westlake, Tuesday, October 27, 2015, as she was one of the five, local winners of the Mizuno Power of Running To Inspire Award. The award was created by Mizuno and Fleet Feet Sports "to recognize people in our community that inspire others by running."
Nominated by her mother, Susie Miklaski, SFSF Board Secretary, Emily was not only awarded locally with a pair of Mizuno running shoes but was also entered in the national competition and is eligible for a $500 cash prize and an array of Mizuno products, namely, running shorts, jacket, top, and bag. The national winners will be announced at a later date.
The awards ceremony also included a 3-mile fun run, followed by pizza and beer. Accompanying Emily for both the run and the ceremony was SFSF Board Member and husband Marc Quayle and Board Treasurer Kristin Stobe.
Emily, never a runner, ran her first 5K at St. Jude in 2008, progressed to the half in 2011, and completed full marathons in 2012, 2014, and 2015 (as well as trained for the full in 2013, but the race was cancelled due to weather), all at the St. Jude Marathon Weekend in Memphis. In addition she has run several other half marathons, as well as numerous shorter- distance races.
SFSF wishes Emily good luck in the national competition.
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| | Marc Quayle, Emily Quayle and Kristin Stobe after the 3-mile fun run. |
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Riverview's C3 Day Exceeds $900
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| | Seitz faculty members Kris Meeks, Sandy Meeks, Meg Larsen, Bernadette Seim-Barnes, and Debbie Thomas flank Susie Miklaski (third from right), garbed in SFSF shirts on C3 Day. |
For the seventh, consecutive year, the Riverview Community School District selected SFSF as one of its eight charities to benefit from its third Friday C3 (Casual Clothes for a Cause) Day; this year donating $952.75, less than $20.00 shy of last year's record-breaking $971.75 total.
Although the C3 Days (days when teachers donate $5.00 to dress casually) are traditionally the third Friday of the month, --- September through May --- this year's SFSF C3 day, originally scheduled for Dec.18, 2015, was moved to December 11, 2015 simply because December 18 was the last school day before Christmas vacation and only a half day of school. Frequently some of the schools include students in the dress-down fundraisers. Since several schools were planning special events for the last week of school, such as Spirit Week at Seitz, with Reindeer Dames on the last Friday, the C3 Day was moved so as not to interfere with the week-long activities and other fundraisers held throughout the week. The switch was a great benefit to SFSF since the Girls Leadership Club at Seitz had originally planned to sponsor a SFSF dress-down day on Dec.18, and it did indeed. (See GLC).
To date, the C3 Days in Riverview have raised $5,833.33 for SFSF. The Foundation greatly appreciates the generous donation and the continued support of the Riverview Community School District where Susie Miklaski, Sophie's grandmother taught English for over 26 years and who currently serves as a substitute teacher in both the high school and middle school.
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Let us love winter, for it is the
spring of genius.
~ Pietro Aretino
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Thanks to all
Marissa Vlasak
When Maya Austerman of Avon Lake invited her friends to her tenth birthday celebration, she stipulated, "No gifts please." Honoring her request, Marissa Vlasak, did something special; she graciously donated $20 to SFSF in honor of her friend Maya, giving SFSF a cause to celebrate.
Waterside South Subdivision
Neighbors of SFSF Grant Chairman and Board Member Shawn Green and his wife Stacey, celebrated the last of the warm, outdoor weather with their Avon Lake neighbors in the Waterside South Subdivision on Halloween afternoon. Amid the many activities at their annual block party, they held a friendly Corn Hole Competition; the neighborhood participants voted to donate the entry fees of $75.00 to SFSF; the winners' prizes were bragging rights! SFSF brags of this mini and thoughtful fundraiser.
The Rock Pile
Fall sales at The Rock Pile netted an additional $28.72 for SFSF. With its "Fundraising That Rocks" initiative, the Avon landscaping and gardening business at 900 Nagel Rd. donates 5% of its sales to SFSF for those customers who mention SFSF at time of purchase. In 2015 The Rock Pile has donated over $100 to the SFSF coffers. Thanks, Rock Pile, you rock!
Pioneer Natural Resources Company
Thanks to Pioneer Resources Company, employer of Charly Miklaski, Sophie's godfather, for its $500 donation to St. Jude Hospital, on behalf of Charly's fundraising campaign. Charly completed the full marathon at St. Jude and raised $4485 for Team SFSF.
Amazon Smile
In 2015, the AmazonSmile program has donated $201.12 to SFSF simply because Amazon shoppers buy their goods through AmazonSmile and select SFSF as their "charity of choice." Shop on and smile, Amazon shoppers! Visit AmazonSmile for additional information and to designate SFSF as your charity of choice for all your future Amazon purchases.
iGive
Since SFSF's inception into the nationally-known charity program, iGive, The Foundation has received $584.89. I give, you give; SFSF gets when supporters use iGive businesses for their online shopping. Visit iGive for more information and to designate SFSF as your charity to support as you shop.
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| Pinnacle Financial Group Selects SFSF
The Pinnacle Financial Group of Cleveland donated $2500 to SFSF as part of their early Christmas charity program. Jennifer Dalman, director of serving and loan administration at Pinnacle, friend of Emily Quayle and avid SFSF supporter suggested SFSF as this year's recipient.
SFSF thanks Pinnacle Financial Group and Jennifer Dalman for their generosity and sharing the real meaning of Christmas.
Pinnacle Financial Group, through its membership in Strategic Alliance Mortgage (SAM) is part of an organization of 23 privately-owned, commercial mortgage firms having 48 offices throughout the US. SAM members have arranged over $80 billion of commercial mortgage loans since 2001, and currently service over $36 billion in mortgages.
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