Saturday, October 19, 2019

There’s Always Hope-A #GivingTuesday Message



NOTE: The Hope-JG Foundation kicked off our #GivingTuesday Campaign (December 3rd) this week. As we move into the  “stretch run” for fundraising for 2019, I can think of no better message to send than this inspired Facebook post written by the love of my life and Co-Founder of the Foundation, Linda Gregoire. Please consider joining our growing family of recurring donors by visiting: https://www.hope-jg.org/donate


I’m letting John sleep in a little later today . He’s very peaceful despite the whooshing  sound of his trilogy (a machine that forces air in his lungs and helps get rid of CO2) it’s not his favorite way to sleep but it’s benefits are worth it. 

He’s  been working hard on several  projects and has required a lot of back and forth with emails, which as of late take more and more time and energy to compose. But with one good typing finger doing the work, he perseveres. I marvel as I see him sitting in his wheelchair hooked up to his feed,  continuing to be productive  in meeting the needs of others. I say that he does what he does not for “the praise or glory”...that is for God.  But because God’s given him, after almost 12 years, the strength to do what he does every day. 

John’s not alone. We’ve seen some of the strongest advocates for ALS  be those that are affected by the very same disease. Our Foundation is a means to fill a need we saw many years ago when we planted the seed of Hope-JG. When a thought crosses your mind and is buried in your heart, you know you need to nurture it and see where it will take you. 

It’s been 5+ years since we decided that we knew all too well the challenges of living with ALS and there must have been a better way to help those in need. It’s not an easy task always...heartbreaking most of the time to hear stories of the needs. Basic needs that are no longer “basic”. Accessibility in and out of the home. Accessibility to a bathroom, nutritious food once a feeding tube is placed. The ability to still communicate once your speaking voice is gone or the ability for a family to have a way to be transported and included in a family reunion. Once bound to a wheelchair these basics are no longer “basic”. They are challenges that need to be met with dignity and love from knowing hearts. 

Yes, we’re a Foundation with all the administrative, legal and financial stuff that goes with running a foundation. Thank God for our amazing Board. Ultimately we want to be the ALS family member that reaches out and comes along side a pALS facing these “mountains” and move those mountains. 

I watched yesterday as John emailed with a company we collaborate with that he pursued until  they caught the vision of how they could help. And later in the day I helped him Skype with another person we have worked with and now have a valued friendship with after seeing her speak on TedTalks. (She is creating “voices for those without voices”.) Then back to his email with one finger to coordinate a upcoming accessibility project for a pALS.

And that was just yesterday. I share all this as his proud wife, as I watched this morning a flood of ‘Likes’ to our foundation page (https://www.facebook.com/Hjgorg/). (Thank you!)  This is never about us...we can’t do this without all your support. This is also about what you can accomplish when a seed is buried in your heart,  no matter what your circumstances are. Able  bodied or challenged, pursue that seed until it grows and bears fruit. 

When John was diagnosed 12 years ago, I knew that wasn’t the end of our story. I knew it was an open door to walk through to see what God had in the other side for us. We refused to accept his life was over before its  time. God is faithful if we trust Him and give it all to Him. It’s been quite an experience and we’ve grown personally from it. We’ve walked along side those God has given us to help, sharing their needs and their hope...in what may appear to be a hopeless situation, there’s always hope!

 Unfortunately when you are diagnosed with a disease like ALS and you begin to have needs, that’s when some of the hardest battles start. The needs are great and Insurance doesn’t  always meet such profound needs. 

So as he wakes up and our day starts with “getting him going”, he’s ready to get back at it. You may wonder...why? Because once you know what this life with ALS is and you have the ability to do something, you must do your part to make this horrible disease easier. We are the tiniest cog in a huge wheel trying to change the disease. We have fellow warriors fighting for a cure, to change laws to try drugs that have the potential to reverse this disease. Others raising awareness and funds to support a cure. Foundations run by family members like ours trying to fight back when ALS walks in and tries to steal your life.  It’s all needed. It all helps. Every bucket of ice dumped,  every golf scramble attended, every fundraiser donated to could be the one that holds the cure or provides help that’s desperately needed. 

The one thing we’ve seen every time we’ve met a new patient is “gratitude” to those they have never met. If you’ve donated or helped in any way, thank you! While John and I may be the faces of Hope-JG, as many others like us are working to change ALS are the faces of ALS, it’s your generous hearts that have made everything possible. 

Thank you and God bless you. Today’s another day to change ALS, one project and one person at a time ❤️⚓️ There’s always hope! 

Linda Gregoire 
Co-Founder

Friday, May 31, 2019

Life With ALS: Reality Check

..

ALS Awareness Month Day 28: Reality Check Warning - This is a challenging post to write as Linda and I try to put a positive face on everything. Linda didn’t want to share this at all   This isn’t easy or pretty. There’s a fine line between positivity and sugarcoating. This is the reality of ALS for us and other ALS families everywhere  

About 3 months ago, we were faced with the reality that trying to transfer to our downstairs toilet, which was always more dangerous for both of us than we’d admit, was now impossible. Another “new normal” was staring us, unflinchingly in the face.

Because I’m tube fed and my formula is Liquid Hope, a vegan, organic  real food formula, my bathroom visits are at least daily - so we had no time to waste coming up with an alternative. Linda is nothing if not resourceful. It took her minutes to to say “Let’s try this.” And we have - for three months.

The Dining Room where we’ve shared family holidays from Thanksgiving to Christmas and birthdays has become a catch all for over 11 years of insurance paperwork and foundation displays. The room that holds so many memories for our family, the table where our boys left Christmas cookies for Santa, has become what you see pictured below.

The routine: When the need arises, Linda preps the commode chair and wheels it into the Dining Room. She then puts on my AFO’s (leg braces) so I can stand.  I roll into the Dining Room, position my wheelchair facing the side of the staircase. Using the stair balusters as hand grips to lift myself to standing (with help from Linda). I stand,, Linda moves my power chair to one side, grabs the commode chair and rolls it in back of me, locks the wheels and I sit. After clean up, the process reverses. Obviously there is a lot more unsavory  clean up since we don’t just flush the toilet. That’s more on Linda and I’ll leave that to your imagination.. Don’t know how she does it - even though I see it every day.

I’ve said and written many times before, that ALS is a humbling disease. It’s humbling for the patient who, because of ever diminishing motor skills is able to do  less for themselves almost daily. But it’s humbling for the all  too often forgotten caregiver too.  Without getting too graphic,  think about what Linda needs to do clean me. Humbling for her. And for me, while I detest the continued loss of control, it reinforces to me the strength and the love she shows me – Every.   Single. Day. Powerful stuff, not for the faint of heart or the weak of spirit.

If you have relatives, friends, co-workers or even “church friends” you only see on Sundays with ALS, don’t be fooled by their smiles. And don’t be put off if they’re NOT smiling. Life with ALS is a daily reality check.

Want to help us help other Maine ALS families? Go to hope-jg.org& and consider making a one time gift or joining our growing family of Monthly giving partners.

Thursday, January 3, 2019

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