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2015 Top-Rated Nonprofit

Project Alive

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Nonprofit Overview

Causes: Health, Specifically Named Diseases Research

Mission: Project Alive (formerly Saving Case & Friends, Inc.) is a 501(c)(3) nonprofit Hunter Syndrome research & advocacy foundation. It exists to find and fund a cure for Hunter Syndrome / Mucopolysaccharidosis II through research, fundraising, and advocacy. Project Alive raises funds and then distributes them to research programs focused on Hunter Syndrome, as well as assisting third parties in designing research and clinical programs most likely to be successful in treating Hunter Syndrome. Project Alive also advocates with regulatory and legislative bodies, as well as industry, for policies supporting the most effective and efficient clinical research programs and compassionate use / expanded access protocols.

Results: Project Alive has been funding gene therapy preclinical research, along with a coalition of Hunter Syndrome foundations, for several years. The founders of Project Alive recruited researchers and collaborated with them during several years of preclinical research, culminating with the preparation for a first-in-human clinical trial expected to begin in 2018. Currently, Project Alive is raising the remaining funds to support the Phase I/II clinical trial. Project Alive has released a mini-documentary series on Hunter Syndrome families, supported the community through personal, regulatory, and industry advocating, and served as a resource for various Hunter Syndrome clinical research teams. Members of our leadership have also served on several panels at FDA and NIH workshops, authored expert pieces related to Hunter Syndrome research and clinical trials, and submitted comments on numerous public dockets related to rare disease research, patient advocacy, and regulatory matters.

Target demographics: families impacted by Hunter Syndrome

Geographic areas served: worldwide

Programs: advocacy, fundraising, and research support

Community Stories

11 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

So much great information for the newly diagnosed family. Invaluable to us in this journey.

General Member of the Public

Rating: 5

Love the work they are doing and the awareness they are bringing to the mps community

1 Catalina C.

Donor

Rating: 5

Saving case &friends and board members mission is to educate parents bringing support and sharing the latest studies in MPS II. SC&F are the only ones I know personally that work in the benefit of our kids getting people together to fund Gene Therapy Replacement the only treatment close to the cure for our boys. This is the site to go

1

Board Member

Rating: 5

Saving Case & Friends Inc. is making strides on funding a cure for Hunter Syndrome.
The organization is 100% dedicated to making sure Hunter Syndrome is cured in the near future!

1

Donor

Rating: 5

Hunter Syndrome is deadly. It is a terrible disease that primarily affects boys, and sometimes entire families and generations of boys who if they are lucky become men. Saving Case & Friends are our band of brothers. This Nonprofit tirelessly supports our families, and continuously driving to save these kids through new treatments, research and scientific innovation. Saving Case & Friends makes a difference in the lives of Hunter Syndrome patients every day by celebrating triumphs, supporting in times of disappointment, setbacks or grief, and in an even greater way by driving for change demonstrating that every boy's life has meaning and their lives are worth saving, and that they deserve the right to grow up and be something through all this adversity. Thank you Saving Case, thank you!

1

General Member of the Public

Rating: 5

My son, Zain, has Hunter Syndrome. Our hope to save our boys is in the heart of awareness and research. Saving Case & Friends are relentlessly and passionately pursuing awareness and fundraising, through #ProjectALIVE, for a gene therapy that will be the miracle we've prayed for...a cure to save our boys lives. Our boys just want to be ALIVE. ProjectAlive.org
A mother who loves her son very much,
Amy Kemp

2 Geraldine R.

General Member of the Public

Rating: 5

saving case...what can I say about this chairty that can make you stop and take a look? It has, in my opinion, not only raised vital awareness for hunter syndrome but it has given the 2000 families worldwide; hope. It has shown me, personally, that I am not alone. At the end of an Internet connection case and so many other boys are alive and fighting everyday just like my son.
The awareness alone on 'Project Alive' has had and is currently have huge success....I live in Ireland, the Irish are getting involved! Melissa, Case's mom, the founder of this chairty; isn't a superhero, she isn't any different from you or I-but, she has a mission within herself and it's not just for Case; it's for all our boys. I do wish I lived closer to help Melissa but to be honest I think she's doing a darn good job with the team she has.
Melissa is every mom; every mom who's watching thier child die slowly before thier very eyes...she's a force to be reckoned with and without her and her drive there would be no Project Alive or Saving Case...which means for me; there would be no hope, no support.
Saving Case is far more than a chairty...it is a community, a beacon of hope for families like Cases all over the world.
Please I beg you help support us .

2 Gabriel C.

Volunteer

Rating: 5

Saving Case and Friends is the go to site for information and inspiration on Hunter Syndrome. Understanding the disease is imperative to better treatments and quality of life and you can find it all there.

2 Britani H.

Volunteer

Rating: 5

Awesome charity for helping boys that have been dx with Hunter Syndrome. Great information for those that want to learn more about the cause.

3

Client Served

Rating: 5

When my son was diagnosed with Hunter Syndrome, nobody I had known and not even our Pediatrician had heard of it, and we had no information. Like any parent terrified for their childs future I took to Google to see what I could learn. I found Saving Case and Friends, and was amazed at all of the information about this horrible disease, and the care that only another parent suffering with their child through this devastating disease could present. We are a small community due to the rarity of this disease, but Saving Case and Friends has managed to bring a lot of families together to try to save our boys.

3

Client Served

Rating: 5

Saving Case & Friends is an amazing group. When our son was first diagnosed with Hunter Syndrome we relied on the people at Saving Case & Friends for critical advice about treatment options, specialty care, and doctors versed in this disease. We also recieved tremendous emotional support as we coped with this devastating diagnosis for our son. Since then, Saving Case & Friends has been a great reseource for the latest medical research, healthcare indsutry news, and regulatory develoments. The group also does an amazing job driving advocacy for Hunter Syndrome. Saving Case & Frinds is truly an outstanding organization.