Our Friend Rob Pontes

$45,262 of $30k goal

Raised by 568 people in 26 months
Rollwith Rob  BARRINGTON, RI
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
+ Read More
Update 5
Posted by Rollwith Rob
7 months ago
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
+ Read More
Update 4
Posted by Rollwith Rob
25 months ago
1
1
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
+ Read More
Update 3
Posted by Rollwith Rob
26 months ago
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!
+ Read More
Update 2
Posted by Rollwith Rob
26 months ago
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
+ Read More
Read a Previous Update
Help spread the word!
 3.3K total shares
Sacha Chevalier
7 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.

+ Read More

$45,262 of $30k goal

Raised by 568 people in 26 months
Created September 28, 2014
$250
Anonymous
2 months ago
MA
$500
Margaret Asselin
3 months ago
MO
$25
Michael Oas
3 months ago

Saw this through Real - much love to you and your family.

DN
$50
Dan Nelsen
3 months ago

So much love for you guys

$20
Anonymous
3 months ago
4S
$190
44 Skate Shop 44 Skate Shop
3 months ago

Roll For Rob Week #1. From the Putnam skateboard community to you!

LA
$20
Luke Aldrich
3 months ago

Life deals a crazy hand sometimes and life becomes mad precious. keep on keeping on my man and I hope others will find the kindness in their hearts as well.... :) stay up!

$10
Wesley Meyer
4 months ago
GG
$28
Gastros Gastros
4 months ago

Glad to vend at your event, for a great cause!

MB
$100
Mike Blabac
4 months ago
Sacha Chevalier
7 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.

+ Read More
or
Or, use your email…
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now
 Share on Facebook