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Scleroderma Foundation Tri-State Inc Chapter

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Nonprofit Overview

Causes: Diseases of Specific Organs Research, Health, Specifically Named Diseases

Mission: To provide educational and emotional support to people with scleroderma and their families; to stimulate and support research designed to identify the cause and cure of scleroderma as well as improve methods of treatment and; to enhance the public awareness of this disease.

Results: Funded an important research project in the amount of $150,000 for 2017-2018; helped to fund over $1.5 million for research each year through the Scleroderma Foundation, participate in advocacy efforts; secure major funding from the Department of Defense; sponsor new investigators and promote multi-center research efforts; provide support groups both one to one and online, present annual education programs and Stepping Out to Cure Scleroderma walks; create awareness on social media sites, through health fairs and events.

Target demographics: those affected by scleroderma and related illnesses

Direct beneficiaries per year: thousands of patients and families in our region

Geographic areas served: NY, CT & Northern NJ

Programs: Patient Education, Patient Support, Awareness and Research

Community Stories

18 Stories from Volunteers, Donors & Supporters

Myrna C.

Volunteer

Rating: 5

Scleroderma Foundation Has given me a lot of knowledge about my disease and has given me the opportunity through their conferences to meet other people with scleroderma making me not feel alone

Previous Stories
2

Volunteer

Rating: 5

I am a patient with scleroderma for 10 years now I am thankful that they have this organization that provides research and also support through support groups in every city and state even internationally. I am a Volunteer as an assistant leader for the Long Island Suffolk County support group this has helped me a lot on how to deal with this disease

1 Amy G.3

Volunteer

Rating: 4

I am a patient and Member of the Scleroderma TriState Chapter. Without this Chapter our efforts to spread awareness, educate and support patients would be very difficult. TriState does so much for the Scleroderma Community. It is a great resource for patients, caregivers, doctors, medical professionals etc... THANK YOU TRISTATE!!

Previous Stories
2

Volunteer

Rating: 4

The Foundation has been a key piece in the puzzle that is my life living with Scleroderma. It has helped me to accept my disease, grow as a person living with a rare chronic illness and advocate not only for myself but for other patients just like me who need to have their voices heard!

1

Volunteer

Rating: 5

I was diagnosed in 2013 and didn't know where to turn. In researching the disease I was fortunate enough to find this wonderful group of people. Every one there is willing ro help whenever and however they can. I have been so impressed with tri state so much so that i became an on line support group leader just so I could be part of this caring and supportive group.of people.

2

Volunteer

Rating: 5

Scleroderma Tri-State Chapter has truly changed my life. The group has given me a sense of belonging, acceptance, understanding, and most of all support and friendships. The things we do in our communities to help educate and raise awareness of the disease really creates bonds with members, and gives the humbling opportunity to meet others that have Scleroderma or within their family or friends. Making those connections and letting them know they have a support group they can go to, and walks, and other events, is a gift not only for myself but others. Because of the educational resources provided and shared, my family and friends seem to understand more about the disease and how to help and be supportive. Im blessed to have the Chapter and im very grateful for all they provide, and how welcoming they are to volunteers!

2

Volunteer

Rating: 5

A great organization with an incredible group of volunteers and suport leaders who have helped hundreds of those living with Scleroderma. June is National Scleroderma Month. Let' make a difference.

2 Zeba H.

Volunteer

Rating: 5

Great organization. Provides tremendous support to scleroderma patients thru support groups, forums, research, advise and knowledge sharing.

2

General Member of the Public

Rating: 5

The Scleroderma Foundation is a great organization. They try to get the word out about scleroderma and give support when needed.

2

Volunteer

Rating: 4

As a volunteer , I run a support group and I, as well as the members in our group, can go here are find different resources. There are also many different support groups in the tristate chapter (area) for Scleroderma.

2 Becky95

Client Served

Rating: 5

I was diagnosed with Scleroderma in 2000. They have been a great resource for me.

2

Volunteer

Rating: 5

I was diagnosed with scleroderma in 1993 and since that time have attended Scleroderma Foundation Tri-State Inc. Chapter support groups and forums. They have taught me how to fight this disease through better health care, therapies and treatment. I have also meant so many others with scleroderma and through those relationships and friendships I know I can make it. The Scleroderma Foundation Tri-State Inc. Chapter has greatly improved my ongoing fight against scleroderma with the ongoing services and information they have provided me!

2

Volunteer

Rating: 5

The Scleroderma Foundation Tri-State Inc. Chapter has been a life saver for many patients in my community which includes me, and my family.

My sister is a scleroderma survivor. She has made tremendous progress coping with this disease. As her caregiver, I have a better understanding of scleroderma, and how to best assist her.

The Scleroderma Foundation Tri-State Inc. Chapter have proven to be a creatable organization by providing well executed programs, events, and resources to those struggling with scleroderma.

They have been at the forefront of establishing new support groups, developing new education programs, and fighting hard to acquire adequate federal funding for scientific research and development of a cure for scleroderma.

We appreciate their efforts in helping to find a cure for this life altering disease.

2 Melody9

Client Served

Rating: 5

As a patient with a rare disease, diffuse systemic scleroderma, you can easily feel alone. Never mind that most people can't even say your disease but know little or nothing about it ! Information on medical websites are limited and not very detailed. The efforts of this organization to increase awareness education and for my research funding for education and treatments has not only been uplifting but has created real medical and life-changing improvements. Thank you to Mary Beth and tri-state chapter for the activities that have provided education , research and awareness For not only the patients with scleroderma but their families, caregivers and the general public !

2

Client Served

Rating: 5

The Scleroderma Foundation Tri-State Inc Chapter has been a source of support, education and access to tools to live with scleroderma. The seminars, support groups and resources they have provided me for over 14 years have helped me cope with this disease and to keep believing a cure is on the way! I have formed great friendships with people living with scleroderma and their families because of this chapter!

2

Volunteer

Rating: 5

Whenever I have called the Scleroderma Tri State Chapter, I have been treated kindly from "hello" through handling my request, whatever that may be. If I need information, it is sent promptly. If I have questions about helping a support group member, an answer has always been provided. The team at this chapter are knowledgeable and experienced. It is nice to be "backed up" by such a great staff!

1

Volunteer

Rating: 5

Having a rare disease is scary enough until you learn there is no cure for it. It's hard to get supported by drug companies that will not profit from it because it's rare. Then you try to explain your illness to others that never even heard of it. Well then you think you're all alone until you get support from the Scleroderma Tri-State Inc Chapter. They never stop working to find a cure. Because of their dedication to all Scleroderma patients and their commitment to research we all believe that a cure will be found in this life-time. Thanks to all of you for making this a reality.

2

Donor

Rating: 5

I have worked for this organization since 2012. Serving as the Director of Patient Education & Support involves organizing and maintaining support groups, holding educational forums, providing advice and suggesting resources that can help patients and families.

Scleroderma is an autoimmune disease that affects the body's connective tissue. It can be a mild disease or can cause life-altering changes to the heart, lungs, skin, kidneys and digestive system. There is no know cause and the cure remains elusive. The complications of the disease can be fatal.

Scleroderma is found more in women than men by a ratio of 4:1. Children can have the disease and it may begin in people in later years.

The Tri-State Chapter serves NY, CT and Northern NJ. The three-fold mission is to provide educational and emotional support to people with scleroderma and their families; to stimulate and support research designed to identify the cause of and cure for scleroderma as well as to improve methods of treatment and: to enhance the public's awareness of this disease.