We Are Thankful for 3 Amazing Women

            

 As we close out 2018 and move into a new year, we’re thankful for many things. We’re eternally thankful for every person who donated money of any amount. We’re especially thankful to every member of our growing $10 For pALS Family (https://www.hope-jg.org/copy-of-donate). $10 each month, multiplied can sustain our Helping Hands fund which provides a variety of needed items to families fighting ALS. Please consider joining. 
On a personal note: I’m humbled and thankful for breaking through the 11 year mark with ALS with my amazing wife, caregiver and Co-Fouñder Linda. There’s no question that I wouldn’t be here and this foundation wouldn’t exist without her tenacity, instincts, passion and boundless love. 

We’re also thankful for our seven Innovators   Each of these individuals brings a unique perspective and life experience to their individual area of expertise. They also share one common trait - a passion to help the hurting.

We’re particularly thankful that three of the seven Innovators are strong, visionary women. We were just notified that Robin Gentry-McGee, Founder and CEO of  Functional Formularies (http://www.functionalformularies.com/) was just named as one of 35 World Changing Women In Conscious Business (#27 in this article).(https://consciouscompanymedia.com/sustainable-business/35-world-changing-women-in-conscious-business-2019/). 

 A common trait Robin shares with her sister Innovators is refusing to accept the status quo for hurting people. All three have specific life experiences that were  “lightbulb moments” which inspired their innovations. 

For Robin, her Father sustained a traumatic brain injury and Doctors painted a bleak picture for his recovery.  He was in a coma and required tube feeding. During a hospital visit Robin read the ingredient list on her Dad’s
formula package. That was her lightbulb moment. The unfortunate standard of care in hospitals for tube fed formulas are formulas which are loaded with sugars, cheap carbs and artificial vitamins.

As a trained Chef who had worked only with organic foods, Robin knew instinctively her Dad needed real food to have any chance for recovery.  After much experimentation in her home kitchen Robin found a combination of legumes,  vegetables, oils, spices and other real food ingredients that replaced the hospital formula.  Her Father improved   So much improvement that the day cane where her Dad stood up and shook the hand of one of the Doctors who told Robin he’d never recover   The Doctor told Robin “What you done here is a miracle.”  Food as medicine - what a concept.  Robin launched Functional Formularies and over just five years has helped thousands of adults and children improve their quality of life with her products Liquid Hope & Nourish.  

Then we have Dr. Rupal Patel, Founder and CEO of VocalID (https://vocalid.ai/ ). Rupal was teaching speech language pathology  and associated curricula at Northeastern University when she had her lightbulb moment.  Rupal was at a Conference with other educators, clinicians and patients. When she heard conversations involving speech impaired patients “speaking” using devices pre-loaded with synthetic voices. It struck her that many of the patients, whether a  12 year old girl or a 55 year old man, were often using the same voice.  As Rupal says in her first TED Talk: “We  wouldn’t dream of giving a prosthetic leg of a grown  man to a young girl. Why then, the same prosthetic voice? I wanted to do something about this.” 

The result was the creation of a unique process of combining digital recordings of a healthy donor voice with any sound from the recipient/patient.  The product of the process is a synthetic voice that contains the “vocal DNA” of the patient with the vocal clarity of the donor. A voice that  is unique to that individual. A voice that makes them distinctive - again. 

Rupal has been recognized in a number of publications including  Wired, the Wall Street Journal, NPR and more. She was also recognized as a “Top Women in Cloud” by CloudNOW. (https://youtu.be/F-qwuG8Eweo)

Our newest Innovator is Julie Lineberger, Founder and CEO of WheelPad  (https://www.wheelpad.com/). Julie’s lightbulb moment came as a result of a tragic accident that left her Godson, Riley Poor, a tetraplegic.    After Riley’s rehabilitation he had a challenging time finding an accessible apartment. When he decided to buy a house, he worked with Julie and her husband Joe’s firm Linesync Architecture to make the home accessible   From the time of Riley’s accident to completion of the home renovations was three years. But not everyone in Riley’s situation is related to an architect. 

This experience caused Julie to work with Riley and Joe  to develop a solution for others who would find themselves in a similar position.  The result is WheelPad is an eco-friendly 200 square foot universally accessible modular addition (bed & bath) that can be temporarily or permanently attached to an existing home. 

Julie has been recognized as a Top Socialpreneur by  Leading Women Entrepreneur and Women’s Day Magazine  (http://blog.nj.com/leading_women_entrepreneurs/2017/05/the_top_25_leading_women_annou.html).

We are honored to be associated with these amazing women. We wish them all the best in 2019. We thank them for their collective passion, heart but most of all, for their friendship.        

S

Man On A Mission

I don't know Chris Rosati. Well, I sort of know him, as well as you can "know" a Facebook friend you've never met. As well as you can know someone from the multiple "On The Road" segments of the CBS Evening News of which Chris has been the subject. As well as you can someone who has become a brother in arms by virtue of an ALS diagnosis.. Maybe I know him better than I think.

I reached out to Chris, as I suspect many did, with a Friend request on Facebook after the first "On The Road" story called "Grand Theft: Donut"(http://youtu.be/eMNVJZRIU9s). He graciously accepted and we've Liked some of each other's posts over the past year or so and exchanged a few messages.

Chris was one of the first people on the wish list of honorees for our foundation's first annual golf scramble coming up this August.

(http://www.hope-jg.org/#!golf-scramble-splash/cd1r). We will be dedicating each of the 18 holes to a person fighting, or lost to ALS and their families. We are honored to have Chris among the 18.

Chris is a man always on a mission. He's gone from being the "Krispy Kreme Guy" to a project called "The Butterfly Effect" (http://youtu.be/90PUAMv7-DM). 

Now, Chris has raised the bar for himself and for families with ALS across the country. More importantly, he's raising the bar for arguably the preeminent brand for ALS - the national ALS Association (ALSA). The same ALSA that collected around $120M from last year's Ice Bucket Challenge (IBC). Chris has publicly challenged the ALSA to issue a statement that they will cure ALS by the year 2021. To read the full text of his statement go to 

http://by2021.org. 

The Hope-JG Foundation has officially partnered with Chris and the "by2021" initiative. We are proud to do so. 

The IBC was a global phenomenon which brought ALS into virtually every home, back yard, locker room and office building in the developed world. With the leadership of Pat Quinn and Pete Frates, the IBC will happen again this year and the new motto is "Every August until there's a cure". Awareness of ALS has been raised. It's now time to focus on a cure. No need for brochures, balloons and banners. It's time to truly support the researchers and labs doing the heavy lifting. 

Chris has a plan. Like I said, he's a man on a mission. I'll let him roll his plan out when he's ready. Based on an email from him today, he's logging some heavy miles on his wheelchair and burning up his speech generating device.

For now, join us on what will be Chris' greatest mission to date. Visit http://by2021.org and start using #by2021 and #believe in your Tweets. 

It's time for a cure. And 6 years is more than enough time...if we get serious.

#by2021.