Team Rylie's LadyBug Gang to Participate in Salt Lake City NF Walk in Honor of
Local Young Girl with Rare Genetic Disorder
Utah families dedicate efforts to raise money for critical research
Salt Lake City – On August 26, 2017, 75 people, collectively known as Team LadyBug Gang, will gather at Sugar House Park for the Salt Lake City NF Walk, an event to raise awareness and money to fund research into neurofibromatosis (NF). Team LadyBug Gang will walk on behalf of "NF Hero" Rylie, a 5-year-old who lives with NF and inspires this team in their mission.
The Children’s Tumor Foundation, a leader in the fight against the genetic disorder neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves throughout the body and affects 1 in every 3,000 people, identifies NF Heroes as those who have demonstrated remarkable courage and positive spirit living with NF. Team LadyBug Gang is comprised of Rylie's friends and family who walk on behalf of Rylie to raise money for NF research. Currently there is no cure for NF.
Rylie was diagnosed with NF1 at six months old after several doctor appointments confirmed she fit all of the diagnostic criteria. Two days after her second birthday, Rylie began chemotherapy treatments for Bi-Lateral Optic Nerve Gliomas, brain tumors that have badly damaged her sight in both her left eye. For her entire life, Rylie has had to endure countless hospitals stays, including surgeries, MRIs, chemotherapy, blood draws, ophthalmology exams, VEP studies, eye glass fittings, hearing tests, and dose after dose of medication. But, through it all she smiles. She smiles and gives us all the strength and determination tackle another day!
“NF, chemotherapy, and everything that has come with this NF1 diagnosis has affected our family in a profound way. Rylie motivates us every day to face NF head on. She shows us all that even on the toughest days we could face anything with the love and support of our family, friends, a smile, and a few good laughs,” said Brandi Evans, Rylie’s mom and Salt Lake City NF Walk Organizer. “Those same principles keep us motivated in the fight to end NF!”
NF Walk is a national fundraising program of the Children's Tumor Foundation that supports NF research, raises awareness, and provides support for individuals with NF and their families. An NF Walk brings together families, friends, and neighbors for fun-filled events, such as food, prizes, and face painting.
WHAT: The Annual Salt Lake City NF Walk
WHO: Open to the public - everyone is welcome (registration required): individuals, friends, families, teams, corporate groups.
WHERE: Sugar House Park
1400 East 2100 South
Salt Lake City, Utah 84106
WHEN: Saturday, August 26, 2017
Check-In Begins 8:00 am
Walk Begins 10:00 am
For additional information and registration, visit www.nfwalk.org/saltlakecity.
About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and may lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer. NF affects 1 in every 3,000 births across all populations equally. There is no cure yet – but the Children’s Tumor Foundation mission of driving research, expanding knowledge, and advancing care for the NF community fosters our vision of one day ending NF. For more information, please visit www.ctf.org.
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Opening for Branch is Baskery, a trio of Swedish sisters known for their banjo punk, acoustic dance music sound.
Local acoustic artist Cherry Thomas will take the stage.
The event will also feature some of the area’s best food trucks, craft beer and more.
Food trucks coming to the event include:
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Media Advisory: Weber County Launching Voting Program to Honor Veterans
Weber County, UT – Official launch event: Friday, July 28th, 3PM at the George Wahlen Veterans Home.
Weber County Elections office is launching a voter outreach project that allows the voters in our community to honor the veterans in their life.
Vote in Honor of a Veteran is a national program that over a dozen States have launched, and is endorsed by the National Association of Secretaries of State. The Weber County Commission supports the Weber County Elections office in piloting this program for the State of Utah. There are plans to implement the program Statewide in the future. No date for that has been set at this time.
Ricky Hatch, Weber County Clerk/Auditor, expressed his enthusiasm about the initiative stating, “We are extremely excited about the launch of the Vote in Honor a Veteran Program. This program honors those who served our country in the past by taking an active part in our country’s future.”
How the Program Works
A voter submits the name of a Veteran that they wish to honor. The voter is also encouraged to submit a picture and a short tribute which Weber County Elections will post on its Facebook page. The voter is given a lapel pin that was designed for Utah by Symbol Arts of South Ogden.
Kick-off Event
July 28, 3PM, George E. Wahlen Veterans Home, 1102 N 1200 W, Ogden UT 84404.
This event will include Boy Scout Troop 63 performing a flag ceremony and a few remarks from Weber County Clerk/Auditor, Ricky Hatch. Julie Hayes is the contact person for the George E. Wahlen Veterans Home. Julie Hayes: Julie.Hayes@AvalonHealthcare.com.
Challenge Coins
Weber County has worked with Symbol Arts to develop a Challenge Coin that we can offer to members of the public for $5. The Challenge Coin is a popular memento among Law Enforcement and the Armed Forces. It will also be unique to Utah’s Vote in Honor of a Veteran program. The $5 fee will be reinvested into replenishing the supply of coins. The Elections Office plans to offer the coins at voter registration drives and community events, including the Weber County Fair. Please visit the Weber County booth at the County Fair, August 9-12.
Weber County Elections would like to publicly thank Symbol Arts for their cooperation, including the donation of the Artwork and the waiver of set-up fees. Symbol Arts has been incredibly helpful and patient during this process.
Other Participating States
Many other States participate in this program and each operates it in a unique fashion. States participating include, California, Colorado, Florida, Iowa, Kentucky, Louisiana, Maine, Minnesota, Nevada, North Carolina, Ohio, Tennessee, Vermont and Washington. A special thank you to the Iowa Secretary of State’s Office for their assistance in implementing Utah’s program.
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