Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

FARA Ambassador Program

The FARA Ambassadors is a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.

Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.

FARA Ambassador Program Mission Statement:

The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

The Ambassador Blog

Subscribe to the Ambassabors Blog

Get new posts from the Ambassadors Blog sent directly to your inbox


This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

The blog features posts about FARA events, articles about living with FA, spotlights on individuals throughout the FA community, weekly interviews to “Meet the Community,” and more. We hope that you will be inspired, uplifted and encouraged through the FARA Ambassador Blog!


 

Clifton Raspberry

CliftonRaspberry1Name: Clifton Raspberry

Age: 35

Where do you call home? Spring, TX

Education (degree(s)? High School. I was an equipment operator and truck driver.

What is your relationship status? Do you have children? No, I am not married, and have no children.

What's a typical day for you? My daily routine changes. Errands, chiropractor visits, maybe wrench on a truck, caregiver visits, seeing my girlfriend, and/or watching TV in the evenings are typical.

How long have you known you are living with FA? I was diagnosed in 2004. Started showing signs in 2001. 

Are there any others with FA in your family? No others. I am adopted.

Describe your transition from walking to walker/wheelchair and/or any other adaptation you have had to take due to living with FA. After nearly breaking my foot, I decided to use adaptive equipment, and use a walker. My additional adaptation has been learning to hold on to things when I walk. 

Add a comment
Read more: Clifton Raspberry

Celebrating the Joy of Happiness

CelebrateHappiness1Each year for almost ten years my family has hosted a fundraiser for FARA, something we like to call, “An evening to find a cure.” This year’s theme was happiness. The event took place on September 22nd at the Owenego Inn and Beach Club in Branford, CT. The evening was filled with psychic readings, reiki sessions, tons of fun raffles, and dinner catered by Outback Steakhouse. The happiness theme was sprinkled all throughout the evening. The center pieces on the tables included books about happiness which were party favors for people to take home. In addition, speeches were given throughout the night by special guests on what happiness means to them. It was a magical night with 230-240 attendees.

The event took months to plan. We are luckily enough to have the best neighbors in the world who make up the fundraising committee. Preparing for the event took many long hours, but it was worth it. It is always worth it knowing we are one step closer to finding a cure. We forgot about all the hard work as soon as we saw the room filled with happiness, support, and hope. A room full of friends. 

Add a comment
Read more: Celebrating the Joy of Happiness

Union Jack's British Pub Party

UnionJackThe recent fundraiser at Union Jack’s British Pub was a great night! Of course, because of FA I could barely hear anything due to all the people there, but hey! that’s why we had this fundraiser… to cure FA and correct this hearing problem! Randy Sisulak is the organizer of all this and has been holding various fundraising events for FARA for the last several years. He is friends with Karen and Pat Keirnan, and their daughter Erin who has FA.  Aside from the Claxton Classic Golf Tournament, (which I also attended in July, and had a blast!), he has hosted events at various local restaurants to serve as meeting spots to gather FA friends and families, as well as his own circle of supporters who are devoted to funding research for FA. These events serve as a great way for local FA families to meet one another and reconnect. So huge props to Randy for a great fun night! 

Add a comment
Read more: Union Jack's British Pub Party

Jakob Mitterhauser

JakobM 3Name: Jakob Mitterhauser

Age: 24

Where do you call home? Vienna, Austria

Education (degree(s)? How will FA add to your future [career]? Bachelor of Science in Geography (2015) ; Starting my individual Master Urban Climatology and Urban Climate in October 2017. FA will not change my future career because I believe there will be a cure in 3-5 years and my progression is mild.

What is your relationship status? I am happy single. I live in my own flat in Vienna alone.

What's a typical day for you? Every day starts with meditation and balance exercises in the morning. This semester I am working on Monday/Thursday while going to University on Tuesday and Wednesday. Friday till Sunday is free and mostly used for fun with family and friends and time in nature. During the week I have physical therapy and mental training once and swimming twice.

How long have you known you are living with FA? (When and how were you diagnosed?) I have been diagnosed in Vienna in August 2011 after looking for a diagnosis for 6 months. I was 18. So, I have known it for 6 years. 

Add a comment
Read more: Jakob Mitterhauser

The Ataxian Screening - Lee's Summit, MO

Ataxian MO 1A feeling anyone with Friedreich’s Ataxia, or a family member of someone diagnosed, knows too well, is isolation--the feeling of not knowing what to do next, where to turn for help or support. Dawn and Eric Graczyk have two of six children, Marissa (12) and Josiah (6), who were recently diagnosed with FA. Determined to make a difference, the Graczyk family has been gathering information and helping to spread awareness since the diagnosis of their children.

Prior to the screening, the family was able to show Kyle Bryant around during his visit. This meant sampling some famous K.C. barbeque, farm life and a tour of Whiteman Air Force Base, just to name a few.

On September 21, 2017, the Graczyk’s hosted a screening of “The Ataxian” at B&B Theatres in Lee’s Summit. In one place, in the middle of the country, people gathered to raise funds, learn and be encouraged and inspired by the film. Whether they had seen the film or not, everyone was there to learn more and show support to those with Friedreich’s Ataxia. Before the showing, Dawn expressed her appreciation for the support and explained how much hope the film had given her and her family. 

Add a comment
Read more: The Ataxian Screening - Lee's Summit, MO
Page 1 of 67

SHARE

FacebookTwitterLinkedinShare on Google+
Science C.jpg

 

Archived in
  the Ambassador Blog