News about Two Roads Communications and our clients:
Dr. Kim Stephens becomes second Project Alive president
Cyclists begin four state, 1200-mile journey
CHARLOTTE, NC – Three cyclist began a 1200-mile journey across four states this weekend to raise awareness of and funds for Hunter Syndrome and Project Alive. They travel through South Carolina and Georgia this week with stops in Hartwell, Athens and Atlanta.
Just prior to the start, the effort received a big boost from Petland, a Florida based pet store chain, with a $20,000 sponsorship donation on Friday. Three days into the ride, they have raised $35,673.
Josh Bickerstaff organized Ride for Project Alive to help his long-time friends Allison and Jon Muedder. The three have been friends since college. Bickerstaff has known their son, Finn, since the day he was born. He watched as Finn was diagnosed with Hunter Syndrome as a toddler. Finn was there Saturday to send Bickerstaff and two others off on the journey that will end in Florida in November.
Hunter Syndrome is a rare, genetic condition resulting in the lack of the enzyme iduronate-2 sulfatase. Without that enzyme, cellular waste builds up throughout the body and causes progressive loss of physical, and in most cases, mental function. Life expectancy for boys with Hunter Syndrome is early teens. The Muedders are board members of the grass-roots organization Project Alive, which aims to fund research and find a cure for Hunter Syndrome.
Bickerstaff will cycle the entire distance while other people will join in for different segments and on the weekends. Project Alive board members and Hunter Syndrome parents Mario and Jenn Estevez will participate in the last leg of the ride from Fort Myers to Fort Lauderdale. They welcome any cyclists who want to join any part of the ride. Route information at https://ride.projectalive.org/.
“Project Alive is so close in terms of the research and the drug itself is in development,” Bickerstaff said. “There is so much potential to this research; it’s tangible. I just wanted to do something that would allow people to come around and support these families in their efforts.”
The ride will continue for three weeks and four weekends and end in Florida. Participants will raise money through sponsorships and each cyclist has his or her own fundraising goal for the ride.
Aldridge Valuation Advisors is introduced to help measure and grow business value
Aldridge Valuation Advisors was created to measure and grow value in business. If you are seeking help to measure the value of a business or increase the value of an existing business, who better to contact than a professional like Gary Aldridge who has successfully done both since 1992?
WHAT GARY DOES: Help business owners measure and grow value in their companies through Business Valuation and CFO Advisory Services.
WHO GARY WORKS WITH: Business owners/CEOs and the trusted advisors who serve them such as attorneys, CPAs, bankers, and other professionals who are helping you get where you want to go.
WHAT SETS GARY APART: The combination of measuring AND growing business value with a long track record of “real world, down-in-the-trenches, roll-up-my-shirt-sleeves” experience as a CFO for companies primarily in the following industries: hospitality, manufacturing, fabrication, health care, distribution, and telecommunications . This experience is invaluable and rare when advising clients like you. Isn’t that the kind of trusted advisor you want?
HOW GARY DOES IT: By identifying what will get you moving in the right direction. To measure value, he prepares a business valuation for your specific purpose. To grow value, he analyzes your current situation, prepare a plan of action, and execute that plan. He has done this for companies ranging from $500,000 to $25 million in revenue.
WHY IT MATTERS: You work long, hard hours and wonder what you did at the end of the month, quarter, or year – all while worrying about the issues you face tomorrow. Is your business value increasing, decreasing, or flat lining? How will you know? AVA can answer these questions for you.
Couple publishing third book in children’s series about the Catholic faith
NASHVILLE, TN – When your children have questions about their faith, wouldn’t it be wonderful to put them in a time-machine and take them back to the time of Jesus to answer their inquiries?
Nashville residents Mike and Sarah Zimmerman are doing that in their Little Catholic Clubhouse book series, which they began publishing last year. They are publishing their third book in the series this month: Annunciation. With the endorsement of the Nashville Bishop, the late Most Rev. David Choby, they have published two books, selling over 500 copies and gaining more than 1600 followers on Facebook and to their blog, where readers can learn more about the characters in the series. All without a major publishing house behind them.
The books follow a group of school-aged children as they come across questions about their Catholic faith in daily life. With the help of a spiritual guide priest and a super computer, they travel back in time to learn answers to questions such as what is sacrifice and what is the true meaning of Christmas. The characters are transported to the Last Supper and to a stable in Bethlehem.
“We had books about the Catholic faith, but nothing that was equal to what the kids were reading and seeing these days online, on TV and in books,” said Sarah Zimmerman, who grew up Catholic and worked as a vet tech before starting her family.
Sarah originally wrote a story just for her three children. Her husband Mike, who converted to Catholicism, studied at Vanderbilt Divinity School and The Maryvale Institute earning MA’s in Theology and Catholic Pastoral Education, was the perfect co-author. The theology teacher and youth director at Our Lady of the Lake helped craft the books to be theologically correct while Sarah brought the stories to life with her illustrations.
“We started this just to teach our kids and tell them a story,” Mike said, adding that they printed the first copy for their family at FedEx. Their oldest son, Jonah, wanted to take the book to school and that’s when they began to see the broader appeal of their stories.
“Other people liked the story, so we made more copies for friends and family,” Sarah said. That grew into self-publishing the book, creating a website, complete with back stories and bios on each of the characters, a Facebook page for fans and a second book. Now they are working on their third book and selling the books on Etsy, Amazon, Barnes&Noble.com, and in a few church gift stores and on their own website. The books are distributed by Spiritus.
“Right now, it is just fun for us, but we do hope that it can get out into the world and evangelize,” Sarah said, adding that they have so many ideas for growth including continuing a Lenten game they created this past year, possibly creating character dolls and, of course, many more books. But the real goal is more altruistic.
“We just want to make the world a better place and raise our kids Catholic and have them be proud to be Catholic,” Sarah said.
PROJECT/ALIVE President named to FDA panel; nominated for Champion of Hope award
NASHVILLE, TN – When her son Case was diagnosed with a rare disease called Hunter Syndrome, Melissa Hogan turned her grief and sadness into hope and, more importantly, action.
She is now being recognized for her action and advocacy by the Clinical Trials Transformation Initiative (CTTI) and the U.S. Food and Drug Administration (FDA) as an appointee to its Patient Engagement Collaborative (PEC), as well as rare disease nonprofit Global Genes with a 2018 RARE Champion of Hope award nomination.
A health care attorney, Hogan dove into educating herself about Hunter Syndrome after her son’s diagnosis and became recognized as an expert on the disease clinically known as Mucopolysaccharidosis or MPS II. As she learned about the genetic disorder, which is caused by a missing or deficient enzyme that normally breaks down cellular waste in the body, she also educated herself about research to treat and even potentially cure her son’s disease.
Soon after her son’s diagnosis, she began to blog about what she was learning and everything her family was experiencing with her son’s condition. The blog connected her to a community of parents around the world whose children had Hunter Syndrome. In 2014, Hogan and several other parents formed the nonprofit Project Alive and she now serves as its President. Project Alive has now raised more than $2 million for research and the development of gene therapy clinical trial for Hunter Syndrome, including a generous $250,000 grant from The Mark Cuban Foundation.
When she is not at home in Tennessee caring for Case and his two brothers, she is organizing Project Alive events and initiatives and traveling around the country to speak about Hunter Syndrome and parent advocacy. Just this spring she spoke at the World Drug Orphan Congress in Washington, D.C. and at the American Society of Gene and Cell Therapy’s 21st Annual Meeting. Next month, she will be presenting on “Managing the Complex Journey for MPS II” at the International Symposium on MPS & Related Diseases in San Diego, CA. She has also consulted on research designs for the disease around the world and serves as a Patient Representative for the U.S. Food and Drug Administration.
She was selected this week from nearly 200 nominees to serve on the Patient Engagement Collaborative (PEC), a group of patients, caregivers, and patient group representatives that will meet with FDA several times a year to discuss topics such as communication, transparency and the best ways for patients to participate in the FDA’s regulatory discussions about medical products.
“We are excited to welcome these experts to the PEC and are confident that they will make a significant contribution to advancing patient engagement in research and development,” said Pamela Tenaerts, CTTI executive director. “This group will play a critical role in ensuring that every step of medical product development accounts for patients’ needs.”
Hogan is one of 100 nominees worldwide for the 2018 RARE Champion of Hope awards, which are broken down into several categories that honor the “notable efforts in rare disease advocacy, science, medical care and treatment, teen advocacy, collaborations in advocacy, and collaborations in science and technology.” Winners will be announced Aug. 7, 2018.
The RARE Champion of Hope nomination recognizes Hogan’s advocacy efforts to not only raise funds for research and a cure, but also her efforts to raise awareness, her willingness to meet with drug companies and doctors and her tireless advocacy on behalf of the Project Alive families. Her actions are not just about advocacy, however, as they are moving the research forward for MPS II.
Project Alive, the organization Hogan leads, is about $750,000 away from being able to fund a gene therapy clinical trial at Nationwide Children’s Hospital in Columbus, Ohio. Hogan has worked closely with researchers to get to this point. She was instrumental in negotiating the agreement with Nationwide Children’s Hospital (NCH) in Columbus, Ohio, for Project Alive to fund the production of gene vector for the Phase I/II clinical trial and has supported the hospital in its receipt of an investigational new drug (IND) approval for the clinical trial in late 2017.
“This is a critical step towards our goal to develop an effective gene therapy product to treat individuals with MPS II,” said Dr. Kim McBride, the clinical principal investigator of the project. “This project reflects two decades of collaborative efforts of Dr. Haiyan Fu at Nationwide Children’s Hospital and Dr. Joseph Muenzer at University of North Carolina at Chapel Hill.”
- More about Project Alive at https://projectalive.org
- More about the RARE Champion of Hope nominations at https://globalgenes.org/2018-champion-of-hope-nominees/
- More about the FDA panel at https://www.ctti-clinicaltrials.org/briefing-room/press-releases
For more information, please contact Barbara Esteves-Moore at 615-631-4383 or at bem@tworoadscommunications.com.
Proprietary home gym app AirGym launch party July 7; New company aims to be the Airbnb of home gyms
After working out in his neighbor’s garage gym, entrepreneur Chris Daskam had an epiphany. He and his wife Sarah started googling home gym sharing software programs and apps and realized there weren’t any.
The AirGym app is free to download and there are no subscriptions or commitments required to use the app, which is geared toward three main groups: home gym owners, members, and personal trainers.
Read full AirGym press release
See Fox News 17 segment on AirGym
The Launch Party Details:
July 7, 2018 4-8 p.m.
2159 Chaucer Park Lane Thompsons Station, TN 37179
Work out and/or visit three AirGym owners’ incredible gyms!
Anyone interested in finding out more information about AirGym can go to the web site at www.airgym.com, or find the app in the app store or in iTunes July 1, 2018.
More coming about AirGym as the app is released July 1.
AirGym is the first platform that allows home gym owners to share their fitness spaces and connect with like-minded fitness enthusiasts and personal trainers. AirGym is set to make getting a workout in more convenient than ever, while allowing home gym owners to make a profit from their investment.
PROJECT/ALIVE receives $250,000 gift from Mark Cuban Foundation in honor of Hunter Syndrome advocate Simon Ibell
NASHVILLE, TN –The families who lead the non-profit organization Project Alive can see the goal they set for themselves in early 2017 on the horizon as they accept a $250,000 donation from the Mark Cuban Foundation this week. That goal was big: raise $2.5 million to fund a clinical trial and, ultimately, a cure for Hunter Syndrome. Now they have just over $750,000 left to raise to reach that goal.
Mark Cuban first became aware of Hunter Syndrome when Steve Nash, one of his players in the early days of Cuban’s ownership of the Mavericks, introduced him to his childhood friend Simon Ibell. Simon, one of the approximately 2,000 people worldwide who suffered from Hunter Syndrome, sadly passed away due to complications from the disease in 2017.
Over the years, Cuban has donated to support Hunter Syndrome research and awareness and wanted to honor Simon and his goal to fund a cure for the devastating disease. Hunter Syndrome is extremely rare, so funding is difficult to come by. The disease causes progressive damage to all the body’s organs and, in its most common form, also causes progressive brain damage and a life span in the teens.
Simon suffered from a form of the disease that did not affect his brain, but physically, the effects accumulated over the years until his passing on May 26, 2017, at the age of 39. Simon’s mother, Marie Ibell, was touched by Cuban’s donation, expressing that it honors Simon’s “heart and his love for these children and gives hope to the cure he was determined to secure.”
The large gift means that Project Alive could fund a promising clinical drug trial as soon as this summer at Nationwide Children’s Hospital in Columbus, Ohio.
“Mark’s generous donation allows us to complete gene vector production and begin the clinical team’s work toward opening the trial,” said Melissa Hogan, Project Alive’s president. “We’re so close to being able to offer the tangible hope of a cure to families affected by this disease. I know that Simon would be proud and honored if he were here as we try to finish strong toward our goal.”
Cuban isn’t the only NBA connection that supports Project Alive and Hunter Syndrome. Hogan’s 11-year-old son Case, who is affected by the disease, was a guest on “Inside the NBA” in late 2017, where he met one of his heroes, Charles Barkley, along with Shaquille O’Neal, Ernie Johnson, and Kenny Smith. That connection was made after Barkley was part of a video shown when Case and his family appeared on the television show “The Doctors” earlier in 2017. The episode replays this week, on Tuesday, June 5, and features a montage of NBA stars in support of Case and his battle with Hunter Syndrome.
Since 2016, Project Alive has raised over $1.5 million and contracted for the production of gene vector for the clinical trial. Its research partner, Nationwide Children’s Hospital, has received IND approval from the FDA to open the clinical trial in 2018 when production of the drug is complete. The Hunter Syndrome community has rallied behind the effort with everything from bake sales to 5K runs, large and small grants, and many media appearances. They raised more than $300,000 in May of this year in honor of MPS Awareness Day on May 15.
For more information about Project Alive or for interview request with families, please contact Barbara Esteves-Moore at 615-631-4383 or at bem@tworoadscommunications.com. Visit projectalive.org/stories to see a mini documentary series about the families. The final mini-documentary is “This is Jack.”
This grass-roots foundation has already raised the money needed to produce the drug to be used in the clinical trial for MPS II patients, and to support an investigational new drug (IND) application.
Affecting approximately 2,000 people worldwide, Hunter Syndrome is a rare, genetic condition resulting in the lack of the enzyme iduronate-2 sulfatase. Without that enzyme, cellular waste builds up throughout the body and causes progressive loss of physical, and in most cases, mental function. The clinical trial targets the most common, severe form of Hunter Syndrome, causing progressive neurological decline and a life span in the early teens. In 2017, the first gene editing clinical trial ever performed, widely reported around the world, was in Hunter Syndrome, but targeted the less common, attenuated form of the disease.
Hogan and other Project Alive parents from Florida to California have worked closely with researchers to get to this point. They have an agreement with Nationwide Children’s Hospital (NCH) in Columbus, Ohio, to fund the production of gene vector for a Phase I/II clinical trial in patients affected by the disease and after beginning production, the drug will be ready in July 2018.
“This is a critical step towards our goal to develop an effective gene therapy product to treat individuals with MPS II,” said Dr. Kim McBride, the clinical principal investigator of the project. “This project reflects two decades of collaborative efforts of Dr. Haiyan Fu at Nationwide Children’s Hospital and Dr. Joseph Muenzer at University of North Carolina at Chapel Hill.”
In 2013, Project Alive began working with Dr. Fu to see if her previous preclinical gene therapy research for a similar disease, Sanfilippo Syndrome (MPS III), could be developed in Hunter Syndrome. That call began a symbiotic relationship between a researcher who knew the science and parents most familiar with the disease, which accelerated the then ongoing collaborative research project of Drs. Fu and Muenzer.
“With the generous support from Project Alive and many other family foundations we have made pivotal progress since 2014,” said Dr. Fu. “This has led to significant advancement in our MPS II gene therapy research towards a clinical trial.”
Researchers have FDA approval for the investigational new drug (IND) application, which allows them to proceed with clinical trials as soon as they have the funding.
“Now we need the funding to catch up with the science and our mission,” said Hogan, will be in Chicago May 15 speaking at the American Society of Gene and Cell Therapy 21st Annual Meeting. A healthcare attorney and an expert on Hunter Syndrome, Hogan has consulted on research designs for the disease around the world. To support the clinical trial, Project Alive has been raising funds from public donations, grants and fundraisers across the United States.
Hogan and her husband, Chris, a national best-selling author and TV personality, have worked tirelessly to not only raise funds, but also raise awareness of the disease through interviews, speaking at conferences, meeting with drug companies and doctors. Other families around the country are doing the same. The Muedders in Charlotte, N.C., have developed a documentary series about Hunter Syndrome which introduces viewers to families fighting the disease. The Estevez family in Miami has rallied the South Florida community. Many Broward County public schools and private schools along with local businesses have hosted fundraising events to help Project Alive.
Franklin mom grows business from sole proprietor to five employees in one year
FRANKLIN – A year ago Franklin resident Amy Delaplain, a former corporate project manager, decided to turn in her multi-million-dollar, Fortune 100 projects for a new business aimed at helping others get their homes, and lives, back in order.
Today, she has grown that business — Project Organize 615 — from a part-time service to a full calendar of clients, five part-time employees and a full-time assistant. Project Organize 615 service offerings include: decluttering and organizing homes and offices, unpacking and setting up new homes, planning and managing projects and creating functional storage spaces.
“Getting organized – and staying organized – is an art,” said Delaplain, who happens to be an artist when it comes to organizing. “I have always loved managing projects and being organized so when I left my corporate job I saw an opportunity to blend my work and my passion.”
Delaplain started Project Organize 615 in the spring of 2017 with little more than an idea, a website and a good dose of tenacity.
“This area is growing so much, service-oriented businesses like mine are in high-demand, especially in a city where so many people are moving in and out in such great numbers,” Delaplain said. “I’ve been able to benefit from that growth in my business and provide clients with something that helps improve their lives.”
After more than 20 years of working for a CPA and consulting firm implementing enterprise systems and reengineering business processes, Amy knew how to set up a business positioned for growth.
She relied largely upon word-of-mouth referrals, online marketing and even neighborhood lunch-and-learn sessions to market her services.
“My talent for organizing is equal to my passion for helping others and playing a role in improving others’ lives. I believe this is what sets Project Organize 615 apart and attributes to my business growth. I am grateful I am able to combine my skills and passion and this shows through my work as a project manager and professional organizer.”
“My clients, who I am honored to call friends, appreciate how I tackle their projects with their end goal in mind, come with a great plan and how we get after it with some good ole’ fashion hard work. We are empathetic and without judgement. Our focus is on creating a functional and organized solution for each of our client’s unique spaces and lifestyles.”
“I am able to take what’s overwhelming to some and make it manageable, while sharing how to get and stay organized and having fun along the way. Clients also appreciate the communication, status updates and follow up I provide from initial contact through the end of the project. Many have shared this was a huge help in keeping them focused and on track.”
“I guess it makes me feel like I’m my own kind of super hero. I love meeting new people and working with them to understand how I can help. If I can minimize their
stress by lessening the workload or giving them a clutter free space so they can enjoy time doing more of what they love, everyone wins.”
In addition to working with clients, Amy writes a blog on her website po615.com offering advice on everything from staying organized when life gets busy to getting organized for healthy eating success.
PAST EVENTS
Two Roads Communications is participating in the NCBWL Business Networking Expo April 18 in Nashville. Attendance is free and we are giving away a free press release writing and distribution to one attendee. Come learn about businesses owned by local Nashville residents, enjoy wine and appetizers and win a few prizes. More information is at ncbwl.org.
Randolph Churchill, Sir Winston Churchill’s great grandson and president of the International Churchill Society, will speak at the first conference hosted by the Churchill Society of Tennessee in March. Registration is now open, and an early bird discount is being offered through Jan. 15, 2018.
The conference is March 23-24, 2018, and will be held in Nashville and Franklin, Tennessee. Early bird registration ends on Jan. 15, after which time the early registration discount ends but registration will continue. Registration is at https://churchillsocietytn.org/regional-conference.
The local society formed in 2016 as a chapter of the international society which promotes the legacy of Sir Winston Churchill, Britain’s prime minister during World War II. Churchill Society of Tennessee president, Dr. John Mather, said the society members “enjoy convivial conversation while gaining a greater appreciation for THE MAN of the 20th Century.” The conference is a chance to explore the man and his words, interests and life.
Churchill’s great grandson is the featured speaker and will kick-off the Schermerhorn Symphony Hall Friday evening concert of the Nashville Symphony Orchestra. He will be reading two of Sir Winston Churchill’s speeches to the accompaniment of a string quartet with music composed by Belmont’s Don Cusic.
As it is Music City, many conference sessions are devoted to the various aspects of Sir Winston Churchill’s great appreciation for all kinds of music. Nashville Symphony Conductor Giancarlo Guerrero will be delivering the keynote address: “Churchill Did Not Have a Tin Ear” on Friday morning. Sessions will continue throughout the day at the Schermerhorn. Saturday, the conferences moves to Franklin, where the local chapter was founded, for a review of Churchill’s insights into the Civil War in the US, including a focus on the Battle of Franklin in 1865.
Other speakers include Belmont University Curb Professor of Music Industry History Don Cusic, local educator and Holocaust lecturer Inge Smith, Rutgers Professor Dr. Warren Kimball, local historian Thomas Cartwright, “Never Give In: The Extraordinary Character of Winston Churchill” author Stephen Mansfield, “Winston & Jack, The Churchill Brothers,” author Celia Lee, and writer Lee Pollack.
More information on the full program of activities, registration and the hotel (including early bird info) can be found at www.churchillsocietytn.org.
For other immediate additional information, contact: John H. Mather, MD, FACPE, President CSOT-ICS Johnmather@aol.com. You may also contact marketing and public relations consultant Barbara Esteves-Moore with Two Roads Communications at bem@tworoadscommunications.com or 615-631-4383 with any questions.
Deep Bench CFO offers Nashville business community a new approach to the C-Suite
Nearly every business needs a chief financial officer. But every business does not need a full-time CFO, nor can every business afford one. Gary Aldridge brings an alternative option to those organizations as he launches Deep Bench CFO in Nashville.
Gary served in CFO and senior financial positions for 25 years. The companies he served ranged from start-ups to companies earning more than $100 million in revenue in the telecommunications, hospitality, manufacturing, health care, distribution, and nonprofit fields. This hands-on experience led him to create his company, Deep Bench CFO. His goal is to help more businesses increase cash flow, solve management and operational inefficiencies, in other words, to “build business value.”
Every successful business, like a successful team, needs a deep bench of talented professionals to help maximize the value of the business.
“The CFO impacts every dollar that comes in and goes out of a business. The CFO is like a rudder on a ship,” Gary said. “Without a rudder, you may go fast but you don’t know where you’re going. A CFO keeps you on course financially.”
Deep Bench CFO offers three branches of service, including accounting, CFO services, and exit planning. CFO services aim to maximize a company’s value by setting up systems for accounting and budgeting, financial planning and improving inefficiencies.
One inefficiency improved through Deep Bench CFO is the wasted time and extra expenses of having a full-time CFO in organizations that don’t need one full time. The Deep Bench CFO model offers company services only when they need it. Deep Bench saves companies from paying costly benefits, full-time salaries, vacation time, hiring expenses, and training. Many companies outsource attorneys and information technology specialists. Deep Bench adds accounting and CFO services to that list of optional outsourcing for local businesses.
“A full-time CFO with benefits can cost even a small company $150,000 a year or more,” Aldridge said. “For larger companies, that can exceed $200,000 a year and up.” We provide these services at a significantly lower cost, thus saving a business money, while still receiving experienced professional service.
“I first started developing this concept about 15 years ago when I was working with a small business that earned about $16 million in revenue annually. I thought, ‘I can manage several of these, reduce client costs, and provide excellent service.’”
Aldridge developed the idea over time while continuing to work as a CFO before launching his own firm this year. He adds a third tier to Deep Bench’s services with his expertise in exit planning for business owners. He has developed a three-part approach for business owners to help them launch a business, grow a business, and then exit that business.
“Ten trillion dollars will change hands over the next 10 years as Baby Boomers exit the work field and sell or leave their businesses,” Aldridge said. “I can help plan for that exit. I really focus on building value for a business.”
Gary Aldridge holds a bachelor’s in banking and finance from the University of Mississippi (1982) and a master of business administration in accounting from the University of Alabama (1997). He is a Certified Public Accountant, and Certified Valuation Analyst.
BLDR was recently featured on the ProductCamp 2017 podcast. Jackson Lefler talked about his new game and his Kickstarter campaign. Listen here.
Visit the BLDR Kickstarter campaign here.