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Jason37

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MAKING HEADWAY FOUNDATION INC
October 25, 2012

My daughter was diagnosed with a JPA tumor in 2001. As this was 3 days after Sept. 11 in the heart of NYC, as terrified parents we were escorted through the police and military barricades to get her to Beth Israel (North) Hospital for brain surgery. We were given the opportunity to 'move in' to her room with her pre and post surgery. The first person who welcomed us in was Maya Manley, a true angel on earth who came into our room with a stuffed toy for my daughter to play with (she also trekked in during the post-9.11 hysteria, just to care for the kids). From that moment on she introduced us to the Making Headway Foundation, the organization whom she and her husband Ed founded to provide support to the children and families of Brain and Spinal cord tumor patients. Since that time, as Beth Israel Closed and the foundations 'play center' moved along with Dr. Allen to NYU, most of the surviving patients of Dr. Allen and his team moved along with them (us being one of them). The foundation has provided us with tremendous support (emotionally and information-wise) over the past 11 years (yep, Julia is 11 years Cancer Free :)) ), each and every time we visit the hospital for our checkups and MRI's we are always welcome by the Making Headway team, always full of smiles and cheerful positive thoughts...I cannot express enough how incredible this foundation is and the thanks I have for what they do. Any and all donations made to this organization directly support the children, many of which are in dire need, far from home and scared to pieces.

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How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served

Phelan McDermid Syndrome Foundation
October 25, 2012

Phelan McDermid Syndrome (aka 22Q13) is a genetic disorder encompassing the deletion of a string of genes on the 22nd chromosome which includes the SHANK3 Gene. SHANK3 deletions and mutations have recently been identified as a cause for AUTISM. Although the number of identified 22Q13 children number around 600 worldwide (as the current tests can only identify deletions and not mutations), the consensus is that the number of currently non-identified mutations may be in the 100's of thousands. My son, a 4 year old boy, is one of the 600 identified deletions. The Phelan McDermid Syndrome Foundation (PMSF) has been a lifesaver for us. It is a non-profit, founded and managed by parents of other 22Q13's. The foundatoin has been recognized and receives support from such organizations as the NIH, AutismSpeaks, etc.The foundation, in addition to providing support to the children suffering from the syndrome, has undertaken a tremendous effort to contribute to the research community. The foundation has determined that by creating a genetic repository of samples from our 600 kids, that AUTISM researchers (in addition to EPILEPSY researchers, PAIN MANAGEMENT researchers, SEIZURE researchers) will be provided with a before unattainable treasure chest of genetic data which we are all confident will lead to discoveries to aid children across the ENTIRE SPECTRUM. Since the foundation is run and managed by parents (all of profoundly special needs children), the fundraising abilities are limited. I am hoping by listing the foundation on this site, that it may provide further awareness which may lead to additional donations.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served