The Foundation for Sarcoidosis Research (FSR) is the nation’s leading nonprofit organization dedicated to finding a cure for this disease. Since 2000, FSR has fostered over $4 million for sarcoidosis-specific research, increased awareness, and serve as an authoritative resource for patients, health professionals and the public. FSR strongly believes that the causes of this disease, and ultimately a cure, will be uncovered through rigorous and extensive scientific research fueled by patient engagement.

Program Overview

 

FSR Patient Ambassadors are selected across the country to work closely with FSR staff to empower patients, facilitate grassroots outreach, advocate on the local and national level, support FSR programs, and facilitate fundraising for sarcoidosis research. In its fourth year, the FSR Patient Ambassador Program will consist of members representing every state in the continental US. Members commit to serve a full-year term from March 2019 to March 2020.

Our goal is for FSR Patient Ambassadors to meet at least once a year in person for a two-day, team training, currently scheduled for February 23-24, 2019. Stipends are provided for this training and while we encourage participation, it is not required, particularly for those members for whom travel would be difficult or harmful. Accommodations will be made available to get you training materials and resources where you live.

During the welcome and training session (or during a self-led training course following training), members of the program will learn about FSR programming and develop an engagement plan through which they can support FSR and/or the greater mission of the Foundation (e.g. promoting research and drug development, advocating on the local or national level to support legislation that helps rare disease patients).

Initiatives led by ambassadors in the past include:

  • Securing state proclamations which designate April as Sarcoidosis Awareness Month
  • Assisting FSR staff in organizing FSR Patient Conferences
  • Planning and executing local walks/fundraising events
  • Organizing a congressional briefing in Washington, DC
  • Assisting FSR-affiliated researchers in developing clinical trials
  • Educating sarcoidosis patients and loved ones about this disease and FSR, connecting them to resources to help them navigate living with this disease
  • Speaking at large-scale FSR and partner conferences
  • Starting and/or leading local support groups
  • Physician Outreach & Engagement
  • Assist FSR in developing new materials and resources for patients/physicians

In addition to building upon the accomplishments of veteran and former Ambassadors, having at least one Ambassador in every state will drastically enhance FSR’s ability to connect newly diagnosed patients, local physicians, and other stakeholders with a knowledgeable FSR-affiliate in any given state. Supported by FSR staff, Ambassadors also serve as state-level experts on the services available to sarcoidosis patients, top-performing clinicians, unmet needs, and more.

 

Expectations

While we hope to accomplish a great deal in the one-year team, we recognize that many unexpected circumstances can arise when living with a chronic illness, caring for a loved one living with sarcoidosis, or when life presents other personal challenges. Thus, the number one priority is self-care and there are no hard and fast expectations from FSR. We recognize that our team members are volunteers, most of whom are living with sarcoidosis and/or juggle full-time jobs and other responsibilities. That being said, we strive to ensure that 100% of Ambassadors are engaged during their term.

Engaged Ambassadors are those who within the last 3 months have:

  • communicated their activities related to their role to an FSR staff member
  • communicated their focus on self-care to an FSR staff member
  • attended in-person and/or online FSR events (e.g. webinars) related to their Ambassador role
  • completed a survey related to the Ambassador program
  • completed a phone “check-in” with FSR’s Patient Engagement Manager

A “check-in” constitutes a phone conversation with the Patient Engagement Manager through which the Ambassador communicates their well-being, any activities, feedback on the program, and needs. Ambassadors are required to complete two check-ins per year.

Ambassadors who choose to focus on self-care and communicate that decision to the FSR Patient Engagement Manager are considered to be engaged and will be encouraged to stay in the program if they are still interested in contributing their time and skills for another term.

There is no term limit for FSR Patient Ambassadors. Engaged individuals, especially those who are veterans in the program, will be encouraged to continue their term and share their knowledge and experience with the rest of the team.

Individuals who were disengaged twice within the same term will be asked to consider stepping down from their role to allow another volunteer to join the program who can better fulfill the communication requirements.

 

Timeline

Applications for the FSR Patient Ambassador Program 2019-20 Term will be accepted on a rolling basis according to the following timeline:

  • November 9, 2018 – application cycle for 2019-20 term open
  • December 12, 2018 – applications close
  • November 9, 2018 – January 2, 2019 – rolling interviews for new ambassadors, final evaluations for current ambassadors
  • January 10, 2019 – welcome letters sent to all 2019-20 Patient Ambassadors
  • February 4, 2019 – public announcement of 2019-20 Patient Ambassadors

 

Training Information

The training for all accepted FSR Patient Ambassadors will be held in Washington, DC on Saturday February 23 to Sunday, February 24, 2019 with an optional Hill Day taking place on Monday, February 25, 2019. 

  • Guest rooms will be provided at the venue, if required, at no cost to Ambassadors for the nights of Friday, February 22 and Saturday, February 23. Approval to attend and rooms for Sunday, February 24 will be offered on a first-come, first-served basis. 
  • FSR will provide meals throughout the training
  • Free parking is available on-site.
  • Shuttle bus from the conference center to Capitol Hill for Hill Day

We expect to award airfare/transportation stipends to all ambassadors. Stipends awarded may not cover your entire airfare/transportation expenses, but we will make every effort to make sure team members can attend. 

The training agenda will be announced in January.

 

Frequently Asked Questions

FSR Patient Ambassador Program FAQs

  1. Do I have to be a patient to qualify as an FSR Patient Ambassador?

No. Anyone who has been affected by this disease whether directly or otherwise who is committed to working collaboratively with FSR leadership and fellow ambassadors to achieve our mission is encouraged to apply. Historically, our team has included sons/daughters of those living with sarcoidosis, survivors or sarcoidosis warriors, and healthcare providers who recognize the burden of this disease and unmet needs of patients and their family members.

  1. Is this a paid position?

This is an unpaid, volunteer service role. While we would love to be able to provide stipends in the future, our budget does not currently allow for reimbursement for your time. That being said, we do routinely offer grants to offset expenses incurred by volunteers who are planning events benefitting FSR, provide travel stipends to attend the annual training, and send materials to volunteers so that they can fulfill their FSR-approved work plan.

  1. When my term ends, can I reapply?

Ambassadors who enjoy the role and who continue to be a mutual fit are often grandfathered into the program for another term. Each ambassador who wishes to return must complete the returning applicant form on FSR’s website (https://www.stopsarcoidosis.org/returning-applicant/) to express their interest and provide insights they’ve developed during their term. A phone interview to discuss challenges and goals for the coming year may take place before another term of service is granted.

  1. If I encounter a personal challenge during my term, how should I respond?

We understand that flare ups can come at anytime and that personal challenges will arise! As sarcoidosis patients know too well, living with a chronic condition can be unpredictable and challenging. Self-care will always come first for the program! If you are experiencing a hardship, please simply be in communication with an FSR staff member. Beyond helping us understand why you may have fallen short of your work plan, we want to be there for you and your family if you are going through a difficult time. Provided you communicate with us to the best of your ability and help when you feel you are well enough to do so, such events will not prevent your participation in the program now or in the future.

5. Is the FSR Patient Ambassador Program open to international applicants?

Unfortunately we are unable to accommodate Ambassadors who live outside the United States at this time. However, we hope to accommodate international Ambassadors in the future and hope you’ll be in touch with us as a volunteer in the meantime. To learn more, please email info@stopsarcoidosis.org.

6. Who do I contact with questions?

Brittiany Jones, FSR Patient Engagement Manager, oversees the FSR Patient Ambassador Program. Questions regarding the program and/or application program can be directed to her via info@stopsarcoidosis.org or 312-341-0500. Please ask for Brittiany.

 

Application

Please note: this application is for NEW applicants only. Current Ambassadors should contact Brittiany Jones, FSR Patient Engagement Manager, for the application for individuals who wish to continue with the program. Only complete applications will be considered. Please allow up to 10 business days for a response.

This form needs to be completed in its entirety to submit successfully. Before you click away or close your window, please double check to ensure a confirmation message replaces the form. If there are additional fields you need to submit or something is filled out incorrectly, you will receive an error message and have the opportunity to fix your application before submitting. If you don’t correct the errors, we will have no record of your application. Email brittiany@stopsarcoidosis.org with questions or concerns.

While we prefer electronic applications, we also make the application available as a PDF and word document so you may complete it at your leisure, copying and pasting your entries into the electronic form below when you are ready to submit.