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

The Hope-JG Foundation 

"I Speak Hope" - PLEASE GIVE AND SHARE!

I'll make this shorter than my usual blogs. The Hope-JG Foundation ( hope-jg.org) in collaboration with VocaliD (vocalid.co) is in the midst of a fundraiser named "I Speak Hope". The goal is to raise $30,000 to build and equip a state of the art digital recording booth. The booth will leverage the VocaliD platform to enable high quality donations to the Human Voice Bank and for voice recipients to provide a sample of their "vocal DNA". 

This is all about giving the gift of a custom crafted voice to speech impaired children, teens and adults. In this season of giving, YOU can make a difference. 

Why is this important? Check this out:

How do you help?

1. Donate what you can at: https://www.crowdrise.com/i-speak-hope/fundraiser/the-hope-jg-foundation

2.  Share this with friends, neighbors, co-workers and your employer and challenge them to match your donation. 

3.  Feel great about giving the gift of speech.

3.  Have a joyous and hope filled holiday season! 

Another Year To Be Thankful For

THIS has been a year to remember. Truly another year for which to be thankful. I speak and write often of perspective. Linda and I chuckle at the social media rants we all post, complaining about a "tragedy", the #%**<>! who cut us off at the intersection or a "horrible day". We all do it. Social media has been the Great Enabler of the Whining Class. And I won't even mention the build up to and post election rants from both sides. Really. I won't mention it.

When we're honest with ourselves - and that's tough stuff, being honest with ourselves, if we can apply some perspective to the day, the week and even the year, few things are as bad as we say. In this season of reflection and thanks perspective is an important tool to have in our spiritual tool belt. So, with my perspective hammer in hand, here are the highlights of another year for which to be thankful.

Obviously, it starts with family and friends both near and far. Without them, this all makes no sense. 

For us, this year has been overflowing with material blessings. Chief among them being the "Hopemobile II" given to us by Donna Dourney and her team at HARK (hark-als.org). We were the first recipients of HARK's "Hopemobiles .For pALS" initiatives.  Stunning generosity.

Then, there was the repair of our crumbling garage floor. An initiative started by President Jim Dlugos of St. Joseph's College, where our youngest, Matt, is a Junior. After a visit to our home, President Dlugos called Matt Cook, President of AlliedCook Construction which has a more than year long project going on campus. Matt visited us and without blinking said "We've had a good year. We'd be happy to fix this for you."  Stunning generosity again.

 Of course, we've had smaller blessings, some monetary and many random acts of kindness throughout the year. Too many to list for fear of leaving someone out but we're thankful for each and every one. From gift cards to mysterious flower deliveries, from food and desserts to freshly picked fruit left on our steps, we're thankful for it all. Oh! (See...I told you I'd overlook someone). We had people like .Greg and Jennifer Cushman show up and 

mow our lawn. That was, until our neighbor, Steve .Swan, asked if we would mind if he started mowing our lawn when he did his. Ummm...yes please! 

As far as The Hope-JG Foundation is concerned, we've been blessed to have an incredible team and Board members helping make our second annual golf scramble better than the first year. We're thankful for the companies and individuals who sponsored or donated to the scramble. And we're always thankful to donors throughout the year. We still need to grow our team so, if you have a heart to volunteer, call or email.

So much to be thankful for when it comes to the foundation. Innovators like Rupal Patel (VocaliD.co) and Robin Gentry McGee (http://functionalformularies.com/) who bless us with their collaborative spirit and support regularly. We're thankful for state legislators like .Drew Gattine and Richard Malaby for their gracious support of our persistent testimony before the  Joint Legislative DHHS Committee. 

We're thankful for future .Innovators like Dexter Ang of MIT who visited us multiple times and blessed with alternative ways of communicating. Dexter and his team at Pison Technologies have developed an exciting skin sensor device which enable paralyzed individuals to control external devices by moving a single, small muscle.

And finally, with November being Caregivers Month, I'm eternally thankful for the love of my life. Linda has been doing more the double duty since before my diagnosis in 2007. With me traveling so much for work, she had boot camp type training for what we would face with ALS. She's become a Mrs. Fix It, soccer and basketball Mom, Nurse, yard maintenance worker and so much more. No one can truly understand the pressures she has borne but, as the adage goes, diamonds are lumps of coal that have endured tremendous pressure. Thank you for being my diamond, Linda. I'll love you forever and a day.

Happy Thanksgiving everyone. I wish joy, peace and perspective this holiday season.