Navigation Links
Colorado Chapter of the FSH Society to host Walk & Roll for Facioscapulohumeral Muscular Dystrophy
Date:8/17/2018

Today, the FSH Society, the world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD), announced that its Colorado Chapter will be holding its 3rd annual Walk & Roll to Cure FSHD in Castle Rock. The event, scheduled for September 8th at the Philip S. Miller Park, advocates for public awareness and is raising funds to support the Society’s work.

The FSH Society’s mission is to accelerate the development of therapies while empowering individuals affected by FSHD. “Our goal is to deliver a treatment or cure to our families by the year 2025,” declared the Society’s President and CEO, Mark Stone.

FSHD is among the most prevalent of the nine primary types of muscular dystrophy affecting adults and children. The genetic condition is estimated to affect 870,000 individuals worldwide and causes progressive weakness, typically in the face, shoulder blade, arms, legs, and torso, but may affect almost any skeletal muscle in the body. There is currently no treatment or cure and approximately one-quarter of patients become dependent on wheelchairs.

“Our event is called the ‘Walk & Roll’ because FSHD can affect individuals very differently,” explained Beth Johnston, Chief Community Development Officer of the FSH Society. “Some people may have weakness in the upper body but can still walk and run. Others are dependent on scooters or wheelchairs. Our event is inclusive of everyone.”

The 3rd Annual Colorado Walk & Roll to Cure FSHD event will take place at the beautiful Philip S. Miller Park on a paved, accessible path, according to Katie Ruekert, of Castle Rock. Ruekert is the founder and chair of the event. Registration opens at 8:00 AM. The walk and roll begins at 9:00 AM, and is followed by a pancake breakfast catered by Flippin' Flapjacks.

“We will have live music from local musician Sal Mancini,” said Ruekert. “Supportive vendors such as Rita's of Castle Rock, local children’s book author Lisa Reinicke and her team, as well as Amanda Hill from Beautycounter, will all be donating a portion of sales back to the event!” Attendees can enjoy face painting, a bounce house, and rewards for top fundraising teams and individuals, including weekend getaways to Vail, Breckenridge and Taos, New Mexico.

“I’m so grateful to our wonderful sponsors who help make this event possible,” Ruekert said. “With the generous support from our sponsors and all those who have registered and donated, we will be sure to reach our goal to raise $50,000.”

Ruekert’s passion for the cause stems from her own diagnosis at the age of 30. A wife and mother of two young kids, she was told by her doctor that she has FSHD in 2011. “I knew in my heart there were other ‘FSHers’ out there who felt alone with this disease like I did, and I wanted to change that,” she explained.

Ruekert realized she needed to be the change she was hoping to see. She proposed the fundraising idea to her local FSH Society support group and the Colorado Walk & Roll to Cure FSHD was created. The first Walk took place in 2016 and raised nearly $20,000. In 2017, the Walk raised $30,000. Starting this year, the Walk has gone national with four other cities hosting their inaugural Walk & Roll to Cure FSHD this coming September and October.

“The Walk & Roll is first and foremost is a fundraiser, generating critical funds to support the search for treatments and a cure, but it is also about so much more,” said the FSH Society’s Johnston. “On event day, for a few hours, we all join together as one. Living with FSHD can be a lonely road. At the Walk & Roll, we realize no one makes the journey alone.”

To learn more and register for the walk, visit https://fshsociety.rallybound.org/COWalkAndRoll

# # #

About the COLORADO CHAPTER
The Colorado Chapter of the FSH Society was created to bring those who have FSHD as well as their caregivers and loved ones together for support and education. Contact: Amanda Hill, Chapter Director, ColoradoChapter@fshsociety.org

About the FSH Society
The FSH Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The FSH Society has transformed the landscape for FSHD research and is committed to making sure that no one faces this disease alone. The Society offers a community of support, news, and information through its website at https://www.fshsociety.org.

Read the full story at https://www.prweb.com/releases/colorado_chapter_of_the_fsh_society_to_host_walk_roll_for_facioscapulohumeral_muscular_dystrophy/prweb15693513.htm.


'/>"/>
Source: PRWeb
Copyright©2018 Vocus, Inc.
All rights reserved


Related biology news :

1. Colorados new alga may be a source of biofuel production
2. SmartMove, Inc. receives $200,000 grant from the Colorado Office of Economic Development and International Trade
3. AlloSource Named One Of Colorados Top Bioscience Companies Of The Year
4. Virginia Tech engineer receives NSF grant to study Colorado flood effects on antibiotic resistance
5. Geosphere covers Mexico, the Colorado Plateau, Russia, and offshore New Jersey
6. Change the Course to restore 1 billion gallons of water to Colorado River Delta
7. Natural-terrain schoolyards reduce childrens stress, says Colorado University-Boulder study
8. Colorados Front Range fire severity not much different than past, say CU study
9. MARC Travel Awards announced for the ACSM 2014 Texas Regional Chapter Meeting
10. MARC Travel Awards announced for the ACSM 2014 Southeast Regional Chapter Meeting
11. Penn State Hass avocado research poster wins American Society For Nutrition Annual Awards
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:11/15/2018)... ... 14, 2018 , ... Researchers from Ambry Genetics (Ambry) ... gene-disease relationships and how it supports medical management decisions at the National Society ... , Ambry has been selected by NSGC to lead a platform presentation ...
(Date:11/13/2018)... LINDA, Calif. (PRWEB) , ... ... ... (HRAM) mass spectrometers (MS) are a class of MS instrumentation with capability ... measuring their accurate masses. Specifically, those coupled to liquid chromatograph (HRAM LC/MS) ...
(Date:11/13/2018)... ... November 12, 2018 , ... ... consulting firm specializing in the life sciences, healthcare, and technology services industries, ... and Compliance. Summerville will be responsible for overseeing CREO’s work with clients ...
Breaking Biology News(10 mins):
(Date:11/7/2018)... ... , ... Diversified Technologies, Inc. (DTI) has installed a PEF (Pulsed ... Technology and Innovation at ASU. Funded by a USDA NIFA SBIR, the purpose of ... and predator control applications. , Algae ponds get up to 50% consumed by predators ...
(Date:11/5/2018)... ... November 05, 2018 , ... GlycoMark, Inc., the exclusive ... through its website, http://www.glycomark.com , as part of National Diabetes Month. ... via the website in November from 9 a.m. – 5 p.m. ET weekdays ...
(Date:10/31/2018)... , ... October 30, 2018 , ... Rooam , ... launch operations in Chicago this winter. After its acquisition of the Tally payment app, ... transactions and set default tips, Rooam will grow its market share and increase the ...
(Date:10/31/2018)... ST. LOUIS, Mo. (PRWEB) , ... October 30, 2018 , ... ... Consider Corn Challenge contest. The goal of this global competition is to find new ... competition. , In 2017, America’s corn farmers produced 14.6 billion bushels of corn and ...
Breaking Biology Technology: