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"Connective Issues" Extras
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CHAPTER AND NETWORK GROUP NEWS
Northern Illinois Chapter
Chapter Member Christa Friend organized a fundraiser at Potbelly Restaurant on June 2. Potbelly donated 25% of the gross receipts that night, resulting in a $300 donation earmarked for the NMF’s 2012 conference in Chicago.
Southeast Florida Network Group
The group held a bake sale at Memorial Hospital South on April 14 and raised $406.
Heart of Iowa Chapter
Chapter members, the Dostalik Family, held their 5th annual garage sale and raised just over $1,200. The funds will benefit the Heart of Iowa NMF Conference Scholarship Fund. Six neighbors and four friends donated items for the sale. Other than one $80, $75, $20 & $15 item, almost everything else cost less than $1. Everything not sold was donated to Goodwill.
Central Indiana Network Group
Natalie Wenzel and members of the network group held a fundraiser and awareness event at Chick-Fil-A in February. They were able to reserve a specified block of hours on a certain day for the purpose of fundraising. They were given a flier to photocopy and disseminate ahead of time and this served as a coupon that had to be presented with each food purchase on the specified date/time. At the end of the period, the group received 20% of the sales from patrons who presented the coupons. They were also permitted to set up awareness materials on a table in the restaurant. They raised $81.57 for the NMF and also raised awareness about Marfan syndrome.
Eugene Network Group
On January 15, the documentary “In My Hands” was shown, followed by discussion of issues raised in the film. The group also initiated its first project, a Local List of Resources for Marfan Care.
Northern California Chapter
The chapter held its 2nd annual Coasters for a Cause fundraiser through Six Flags Discovery Kingdom in Vallejo. From the chapter’s portion of ticket sales and additional donations, a total of $716 was raised.
Omaha Network Group
On November 13 the group had a Potluck & Football get together at the home of Roger and Sherry Heldt. With abundant food and a Huskers win, everyone had a fantastic time.
On December 3, the group had an NMF information table at Mike & Josie Harper Center, Creighton University Campus, in Omaha. It was a great opportunity to raise awareness with doctors, nurses, EMT personnel, fellows, residents and students.
Potluck Picnic was held st Antelope Park on May 21 from noon to 5 pm. It was a day of social activities for family and friends who wanted to get to know others living with a connective tissue disorder.
Portland Network Group
On February 19, group members volunteered at the Columbia County Shrine Club Crab Feed in St. Helens, OR. Attendees enjoyed great food and games and a portion of all the funds raised ($1,252) was donated to the NMF for the 2011 annual conference in Portland.
South Central Pennsylvania Network Group
On March 26 at Holy Spirit Hospital in Camp Hill, members staffed an information table at a “Day of Dance”, a women’s heart health awareness event that also provides free health screenings. Hundreds of women from the community, as well as health professionals, participated in a wide variety of interactive dance events and stopped at the NMF information table to ask questions and take information. They reached several families that will pursue diagnosis.
Southeast Florida Network Group
The Network Group has been meeting monthly with a focus on member education. In January, they screened “In My Hands,” followed by a group discussion. Their February meeting featured a presentation by Dr. Roman Yasopov, a geneticist, and in March, they heard a talk by Dr. Marshall Stauber, an orthopedic surgeon.
PEOPLE AND EVENTS
Running for the NMF
Shawn Moran, of Solana Beach, CA, held the 3rd Annual Kyle Moran Memorial Triathlon on May 7 at Mission Bay Park in San Diego. This annual event is held in memory of Shawn’s brother, Kyle, who had Marfan syndrome. About 20 people either participated or volunteered and $235 was raised for the NMF.
More Hang-a-Heart
The Cherokee County Career & Technology Center in Centre, AL, raised $587.10 through the Hang-a-Heart Campaign in honor of young Lily Shaw.
Memory Walk
The 21st Annual Fred Murray Memory Walk took place on March 27 at Presque Isle Park in Erie, PA. The event raised $600 for the NMF’s Emergency Medicine Campaign. Since it began, this annual gathering of family and friends has raised more than $10,000 for the NMF in Fred's memory.
Musical Review
The Actors Guild at Harford Community College in Bel Air, MD, presented a Musical Review called Rock Through Time and included musical numbers from a number of shows including Rent. They raised $110.11 for the NMF in memory of Jonathan Larson.
Chick-fil-A Fundraiser
In April, Debbie Peters, of Kingsport, TN, held a Spirit Night fundraiser at her local Chick-fil-A and raised $123.50 for the NMF.
T-Shirts
Wendy McConnell, of Warner Robins, GA, created t-shirts to raise awareness about Marfan syndrome in her community. She is raising funds as well and so far has raised $30 for the NMF.
Dress-Down Fundraising
Environmental Systems Design, Inc. in Chicago, IL, selected the NMF to benefit from its company-wide Charity Jean Friday and raised $255 for the NMF.
The staff at Farmersville Elementary School in Easton, PA, raised $94.60 for the NMF during their casual day at work.
Tall Clubs
The Tip Toppers Club of Detroit raised $400 for the NMF during its 70th Anniversary Weekend; the donation was matched, resulting in a total of $800 donated to the NMF.
The NMF received $466 that was raised at the Paramount Tall Club of Chicago prize drawing that took place in the Spring.
Hang-a-Heart in Wisconsin
During the month of May, Abbie Dregne, age 8, sold more than 700 hearts and raised over $1,000 at her grandparents’ convenience store and gas station and her aunts’ family restaurant in Readstown, WI. More than 200 hearts were sold in two days during their annual customer appreciation event.
Abbie is the only one in her family affected with Marfan syndrome. She was diagnosed at age 4 during a routine eye exam. Her family has an aggressive attitude when it comes to finding a cure for Marfan syndrome, so the Have Heart campaign is the perfect way to show support and bring awareness to more people.
Supercuts Fundraiser (AZ)
Supercuts salons in four states held their annual “31 Days of Giving” campaign in December and the NMF was chosen for Day 19. T he resulting donation was $548. A s part of this promotion, Salpointe, AZ, High School senior Joseph Serrano teamed with the NMF and the Make-A-Wish Foundation during the International Home Run Derby in Tucson in December. Joseph was one of 99 athletes from around the world who participated. Each participant partnered with a local baseball player who is suffering from a life-threatening medical condition; Serrano teamed up with NMF member Ben Faust. Together they raised awareness and money for the NMF the Supercuts “31 Days of Giving” campaign.
Cynthia Ramirez’s Memorial Fundraiser (CA)
Cynthia Ramirez of Salinas, CA held a fundraiser on February 19 in memory of her son, Jordan Joel Ramirez, who passed away in 2010 at the age of 17 months. She sold lunch food plates and included information about Marfan syndrome and about Jordan, and raised $500 for the NMF.
Laura Cockerham’s Candle Fundraiser (FL)
Laura Cockerham, of Melbourne, FL, has an online candle business, Gracie’s Corner Candle Shoppe, and donates a portion of sales revenue each quarter to the National Marfan Foundation. A total of $130 was recently donated.
Ellen England’s Fundraiser (IN)
Ellen England, of Auburn, IN, sells note cards featuring her beautiful photography and donates 10 percent of her sales to the NMF. Her 2010 donation was $96.
Jane Brandt’s Learn-to-Skate Fundraiser (NH)
For the second consecutive year, St. Paul’s School in Concord, NH, Girls’ Junior Varsity Hockey Team held a “Learn to Skate” fundraiser to benefit the NMF, in memory of Michael Brandt, the son of Jane Brandt, longtime faculty member of the school. The girls and their three coaches volunteered to teach faculty and staff members’ children how to ice skate. The team members also operated the concession stand, raising almost $200 through the sale of drinks and snacks. In total, $260 was raised for the NMF.
Ridge High School’s RENT Fundraiser (NJ)
The Drama Club of Ridge High School in Basking Ridge, NJ, performed RENT and collected donations for the NMF from the community during a special encore presentation of the song “Seasons of Love,” featuring some of the school’s faculty members. A total of $880 was raised for the NMF.
Andrew and Stephen Melin’s Change of Heart Fundraiser (OR)
Young Andrew and Stephen Melin, of Saint Helens, OR, held their annual fundraiser, “Change of Heart,” in February. They made water bottles into collection jars, covered them with red wrapping paper, and tied them at the neck with pink ribbon. They used a heart stamp to decorate the label, which also included info on the NMF and Marfan syndrome. They gave the bottles to friends and neighbors and asked them to deposit their loose change in the bottles during the month of February. Their effort paid off with a $522 donation to the NMF Conference Scholarship Fund.
Kathleen Cadden’s Jewelry Fundraiser (PA)
On February 24, Kathleen Cadden, of West Chester, PA, held a Premier Jewelry show at her home, with 30 percent of the profits donated to the NMF in honor of her son, Tommy. In addition to the fun shopping experience, awareness was raised about Marfan syndrome – and $1,000 was donated to the NMF.
PeoplesBank Dress-Down Fundraiser (PA)
Employees of PeoplesBank in York, PA, selected the NMF for the month of March to benefit from their Casual Day Program. As a result, $508 was donated to the NMF.
Larie Beck’s Scentsy Fundraiser (WA)
Larie Beck, of Richland, Washington, held a Scentsy Fundraiser. She took orders for Scentsy products from her family and friends; then, instead of earning free products as a hostess, she earned cash instead, and donated the $100 to the NMF.
March for Marfan (OH)
The 6th Annual March for Marfan took place on April 9th at Case Western Reserve University in Cleveland, Ohio. The 5K Run/3K Walk, started by Maya Brown-Zimmerman in 2006, is organized each year by Alpha Phi Omega – Theta Upsilon Chapter. This year, $2,265 was raised for the NMF. Since its inception, a total of $10,783 has been raised for the NMF!
Tall Club fundraisers in New Jersey, Wisconsin and Nevada
On April 16, the Central Jersey Tall Friends Club held its annual “Have A Heart for Marfan” dinner dance fundraiser at the Breakers Hotel in Spring Lake, NJ, to benefit the NMF PennJersey Chapter. Other TCI clubs have continued to support the NMF, including the Mad Town Talls, of WI, with $100; The St. Louis Tip Toppers, with $371; and the Tall Club of Las Vegas.
More photos from the NMF’s tour through Florida
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