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Kristi P.

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8 reviews

Review for Children's Cardiomyopathy Foundation, Inc., Tenafly, NJ, USA

Rating: 5 stars  

The CCF is very first organization I reached out to after my sons diagnosis 8 years ago. Here I connected with other parents in similar situations. The support and lifesaving information has been invaluable to us!

Role:  Client Served
 

Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  

Being the parent of a child with a rare disease of less than 200 known affected males makes for a very isolating and lonely scenario... Being told by countless doctors that they have never heard of the condition, even more so.
But thanks to Barth Syndrome Foundation, they close that gap.
They provide endless information and support. They connect the families which are scattered over the world.
The information provided to families and physicians by BSF is invaluable and at times lifesaving. And now, thanks to BSF, we are even on the verge of a possible breakthrough treatment! I cannot say enough about BSF, my extended family. In a world where my son is extraordinary, this is the one place to come where he can feel ordinary.

Role:  Volunteer
 

Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  

We will always be so grateful for Barth Syndrome Foundation.
More than seven years ago, our journey began in a way that the majority of this world will be lucky enough to never experience.
The future was bleak and we felt very alone.
Our newborn was in heart failure and given a very poor prognosis. He was placed under hospice care at 45 days old until the age of 15 months when he overcame.
Along the way, Christopher has defeated many odds and obstacles, including hospice, a stroke and a current medicine regimen of thirty two doses a day and two injections a week.
Throughout it all, he remains positive and happy. Our faith has carried us through many dark times.
And Because of Barth Syndrome Foundation, we have been given HOPE, a support system and life saving information.
We no longer feel so alone being able to interact with other families with similar daily challenges.
Our BSF family is the best part of this horrific diagnosis.
We are blessed to be given HOPE through seeing the older boys and men grow stronger and be productive members of society and even start families of their own!
Together, the efforts of Barth Syndrome Foundation, the supporters and scientists who are tirelessly dedicated to our guys, we have tangible HOPE of several possible treatments for which there are currently none.
We have HOPE for a cure someday.
Because of Barth Syndrome Foundation, a once 100% fatal diagnosis now before the age if three has HOPE for a prolonged survival rate.
We feel that Barth Syndrome Foundation has played a role in the survival of our own son.
But there's still so much to be done.
We are still suffering the loss of some incredibly precious men and boys.
We have HOPE for a future in which Barth Syndrome never cause suffering or loss of life again.
We have HOPE that each boy will receive a diagnosis that will undoubtedly help their chances of survival and quality of life.
We HOPE that you will join us this giving Tuesday, December 1, 2015 in supporting Barth Syndrome Foundation. What will YOU give?
www.barthsyndrome.org

Role:  General Member of the Public
 

Review for Children's Cardiomyopathy Foundation, Inc., Tenafly, NJ, USA

Rating: 5 stars  

I can't believe it's already been so long, but 6 years ago when we received our diagnosis for our son who has cardiomyopathy, Children's cardiomyopathy foundation was the first place I reached out to. I could not have made a better choice as they have been there to offer information and support. The community composed of affected families are wonderful and have definitely helped me cope along the way. Thank you, CCF!

Role:  Client Served
 

Review for Special Spectators Inc, New York, NY, USA

Rating: 5 stars  

Special Spectators showed ours and some other very special families an incredible time at the Mississippi State Homecoming game! We were given prime parking, tailgating, visit to the locker room, to on field recognition. Each volunteer behind this holds a special place in our heart. Thank you for making my little boy very happy. This experience was right up there with Disney World for our family!

If I had to make changes to this organization, I would...

let more know about it!

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

A lot

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?

2013

Role:  Client Served
 

Review for Mercy Medical Angels, Virginia Beach, VA, USA

Rating: 5 stars  

Mercy Medical is the reason my son is allowed to attend a multidisciplinary clinic which is familiar with his orphan disease. Without them, this would not be possible for our family. We are extremely thankful that they are helping us see specialists who are familiar with our son's disease Barth syndrome.

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

Role:  Client Served
 

Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  




We are so glad that we found BSF! We were warmly welcomed into what is commonly referred to as a family. I see why the BSF is described as such and is composed of families, physicians, scientists, donors and volunteers around the world.. This overwhelming, mind boggling disease has a group of warm, caring, compassionate and INFORMED people. It is such a reassuring feeling to know there are others who have been exactly where we have been.

We all have such a unique story, yet they are all very similar. If someone is newly diagnosed with Barth syndrome, contacting BSF is a MUST! There you can find lifesaving information and support beyond expectations

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

Role:  Client Served
 

Review for Dare To Hope Foundation, Marietta, GA, USA

Rating: 5 stars  

My son, who is almost 3, suffers from Barth syndrome, a rare disease.
Dare to hope provided him with wonderful learning toys that he enjoys daily. I am very thankful to them and they have my full support. I hope to be in the position one day to give back to this deserving non profit.
Thanks to Dare to Hope for putting a smile on my son's face!

I've personally experienced the results of this organization in...

seeing them make a difference in the lives of many special needs children by bringing a smile to their face!

If I had to make changes to this organization, I would...

not change anything! If any changes need to be made, that is the support behind this cause.

Role:  Client Served & My child received learning toys through the non profit.