Our Friend Rob Pontes Round 1

$47,922 of $30,000 goal

Raised by 596 people in 50 months
Rob Pontes is a loving husband and father of two young daughters, Avery and Oliva. On any given day he could be found skateboarding with his friends or putting on events for work. Other days would consist of 7am wakeup calls from the girls ready to run around outside to create beautiful family memories. Now, things are a little different. About two years ago Rob began feeling lethargic and developed other symptoms that doctors initially thought to be Lyme Disease... As these symptoms progressed Lyme Disease was ruled out, and doctors are now leaning towards the early stages of ALS.  A once active guy, Rob now needs a wheel chair to get around on those family outings and the wheels on his skateboard have not rolled in two years. Simple chores around the house like laundry and dishes(yes he used to do them both!)can’t be done due to weakness throughout his entire body. Even kissing the girls goodnight before they go to sleep is physically draining.

Rob continues to work hard but is devastated by the condition that has slowed him down. Its heartbreaking to hear the kids ask why he can’t go outside and play in the yard with them.
We have committed to doing everything possible to treat Rob's condition, which often means trying new treatmeants. In doing so the Pontes familiy has accrued large medical bills, which have become a difficult financial burden to shoulder. Rob is an amazing guy to so many different people, so with the urging of his close friends we are looking to the community around us for some support. All donations will help support a great person find his way back to a normal life. Thanks for your time and support.


Friends and Family of Rob Pontes
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We are incredibly excited to announce that the next big Roll for Rob event will be held on July 24th at the Kennedy Plaza Rink in Providence, Rhode Island. Rob grew up only a few towns over, so it's really exciting to be able to host this one so close to home.
Unfortunately, Rob's condition continues to worsen as he is slowly losing the use of his arms and hands. In January, Rob enrolled in a two week course at Spaulding Rehabilitation where he was taught new ways to work around his physical limitations and prolong his independence. In addition to that, we have had some pretty unique technological advances at the Pontes household. Rob now has a wheel chair accessible mini van, which came at a great time because we also upgraded his wheelchair to be fully motorized. Lastly, we had a lift put onto the outside deck to help assist Rob in getting in and out of the house with ease. Although his physical condition is slowly declining, he is still as neurologically sharp as he has ever been. The same witty and sarcastic Pontes is a pleasure to be around and is still considered the worlds greatest dad by Olivia and Avery.
Rob will continue to take his daily medication along with IVIG infusions once a week, so we are still hopeful that one of the meds will slow down his progression. Rob has been incredibly positive throughout this situation and has never wavered on hope. We know you are all pulling for us and the outpouring of love and support is what keeps us going so please, don't stop. We look forward to seeing you all this summer in Providence on July 24th!

Friends and Family of Rob Pontes
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We have positive news for Rob! He is one of only 25 people nationwide to have been accepted into the Brainstorm Cell Therapeutics ALS trial program.
Brainstorm Cell Therapeutics is a biotechnology company working to develop stem cell therapies for neurodegenerative diseases like ALS. Stem cells are unique in their ability to self-renew and differentiate into many cell types. It is Brainstorms' belief that stem cells can differentiate into the types of cells that degenerate in ALS patients.

On November 17th, Rob will be going to Mass General where he will undergo an operation to extract bone marrow from each of his hip bones. Doctors will then take that to Dana Farber in Boston to grow the stem cells. Once the stem cells multiply, Rob will return to Mass General to receive the newly generated stem cells through his spine. Currently the tentative date for his second surgery is December 11th: he will not be undergoing anesthesia but will be kept a few days for evaluation. After Rob's second surgery we wait and hope for positive results; however, this is a blind trial and it is possible Rob will be one of the patients to receive a placebo. Please keep us in your thoughts and pray with us that Rob does not receive the placebo!

For more info check out: Brainstorm-cell.com
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Sorry about the hiccup with being able to accept donations earlier today. We are now back up and rolling. Thanks for your patience and support!
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We are amazed by the outpouring of love and support that has come from this movement. It has truly showed the incredible community and family that surrounds Rob. Our first goal was reached a lot sooner than anticipated due to your generosity and exposure to these social media outlets. There is a long road ahead so please do not stop sharing this with others around you. All donations mean the world to us so that we can continue to fight for Rob's health and happiness.

Thank you so much!!!
All the friends behind ‪#‎RollwithRob‬
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Read a Previous Update
Sacha Chevalier
31 months ago

I have seen Roll With Rob t-shirts everywhere, and I've always meant to find out what it was. A friend shared this on her FB page...this is so heartbreaking. Millions of deadbeat dads in this country...and this happens to a father any kid would be lucky to have. I hurt for you all, and as soon as we have any money to spare we will definitely contribute. Wish I could do it today. We will also go to the Providence event. Lots of love to you guys.

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$47,922 of $30,000 goal

Raised by 596 people in 50 months
Created September 28, 2014
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JW
$50
Jenny Winter
4 months ago

I am praying for you and your family.

DA
$50
Deanna Aldrich
5 months ago
1
1

Amy and family...just want you to know I am thinking of you from Syracuse, NY.

$1,000
Anonymous
16 months ago
$25
Anonymous
16 months ago
$100
Anonymous
16 months ago
AB
$150
adam bovee
16 months ago

Roll Forever Rob

CS
$100
Casey Stahr
16 months ago

Sending love and support from The Stahr Family in Florida.

Sacha Chevalier
31 months ago

I have seen Roll With Rob t-shirts everywhere, and I've always meant to find out what it was. A friend shared this on her FB page...this is so heartbreaking. Millions of deadbeat dads in this country...and this happens to a father any kid would be lucky to have. I hurt for you all, and as soon as we have any money to spare we will definitely contribute. Wish I could do it today. We will also go to the Providence event. Lots of love to you guys.

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