• Create awareness.

    Did you know that Spinal Muscular Atrophy is the most common rare disorder? It affects 1 in 6,000 babies.

    Read More
    Slide 1
  • Raise funds.

    Over a dozen clinical trials are underway, but lack of funds are keeping us from moving forward. It's time we change that.

    Donate Now
    Slide 2
  • Provide hope.

    Let's work together to build a community in which hope is the driving force.

    Be Remarkable
    Slide 3

WELCOME TO WORKING ON WALKING

 

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Working On Walking (WOW) is a non-profit, 501c3 certified organization that aims to help pave the way to cure SMA. As a nonprofit organization dedicated to supporting all efforts related to Spinal Muscular Atrophy, we aim to continuously provide the SMA community with funds, awareness, and hope which all play an integral role on our journey to our ultimate goal—a cure. Working On Walking will provide information on this debilitating disease, as well as offer firsthand experience on what living with SMA is like. And, in our quest to pave the way towards a cure, we will continuously raise funds for SMA research through fundraisers, selling items, and online donations. Our efforts under this organization will be done with love and the faith knowing that we can conquer this disease.

Like us on Facebook and follow us on Twitter!

About Us

A Brief History

The title, “Working On Walking (WOW)”, was coined by a woman named Alyssa Silva, who has SMA I, when she was only ten years old. As a little girl, Alyssa would have lemonade stands to raise money for Spinal Muscular Atrophy and had always dreamed of raising $100 for this cause. Selling lemonade at 50 cents a cup wasn't the most lucrative option; so, with a goal in mind and an incredible support system by her side, Alyssa decided to branch out and explore other ventures. Almost two decades later, over $150,000 has been donated to SMA research. Her efforts have always been done under the name WOW, and so, we'd like to welcome you to the official website of the newly established non-profit organization, Working On Walking. Take a look around!

Annual Fundraiser


Funding our way to a cure


Founded in 2010, the Annual Working On Walking Golf Tournament and Dinner Fundraiser is held in Rhode Island and open to the public. Our annual fundraiser is meant to help fund a way to a cure for this terminal disease and bring the community together to fight for a worthy cause. For the past seven years, we have been able to donate thousands of dollars to organizations dedicated to SMA research thanks to everyone's outpouring of support. This year's event will take place on August 8th (during National SMA Awareness Month), and we hope you'll join us!

Visit the Working On Walking Fundraiser page here!

Dare to be Remarkable

A Documentary Project

"Dare to Be Remarkable" is a documentary film project that began in June 2014. With the help of Animus Studios of East Providence, Rhode Island, our goal is to create a full length documentary which details Alyssa's everyday life living with SMA. We hope this documentary serves as an educational tool for people to learn more about SMA and provides hope and inspiration to those living with this debilitating disease. No matter the adversities we face, we want our viewers to be reminded that you can always dare to be remarkable.

 

Please visit the Dare to be Remarkable webpage here.

 

***UPDATE: This documentary has been accepted into the Rhode Island International Film Festival that will be taking place THIS August! Stay tuned as we continue to receive more details on the premiere of our film and how you can attend.

 

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Contact Us

Who We Are

From left to right: Alyssa Silva, Founder/President • Mary Smith, Vice President • Phil Silva, Treasurer • Suzanne Tellier, Secretary • Tim Draper, Board Member • Fred Smith, Board Member • Michael Carbone, Board Member • Kimberly Carbone, Board Member • Adam Silva, Board Member • Dori Silva, Board Member • Amanda Smith, Board Member

For questions/comments, please contact info@workingonwalking.org!

BOARD OF DIRECTORS