Solution Overview & Team Lead Details

Our Organization

Fibromyaglia Care Society of America

What is the name of your solution?

The Center of Excellence

Provide a one-line summary of your solution.

The Center of Excellence Program will utilize a virtual platform to provide treatment, care, and resources to those living with fibromyalgia.

What specific problem are you solving?

According to El Instituto de Estadísticas de Puerto Rico (IEPR)(The Institute of Statistics in Puerto Rico)  and el Informe de Enfermedades Crónicas (The Chronic Disease Report) 28.8% of the population in Puerto Rico are living with Fibromyalgia. Fibromyalgia (fibro) is a chronic condition that impacts the nervous system, causing widespread pain, central fatigue, problems with memory (fibro fog), and other mental and emotional distress complications. Due to the lack of research on the condition itself, there is also a lack of treatment options, education on how to live with the condition. 

In many people with fibro, the pain can be so severe that it stops them from performing even simple tasks. This activity reduction leads to deconditioning and an overall downward spiral of despair and ill health. Many patients with fibromyalgia have to apply for disability because they cannot work. Others with fibromyalgia are fortunate to suffer from only mild discomfort and stiffness. The fatigue often associated with fibro is also varied from person to person oscillating between hypersomnia and insomnia.

The problem we intend to address is limited access. At this time there are little to no resources that specifically address the needs of the fibro community in Puerto Rico.

What is your solution?

What is it?

The Virtual Coordinated Care Program will be a dual-capacity model implemented in Puerto Rico in order to increase the access to Fibromyalgia resources and treatment. 

What does it do? 

It will establish 4 cohorts that will engage in direct and peer-to-peer support.

What processes and technology does it use? 

Participants will utilize zoom technology and google applications to identify and engage with case managers to goal setting that they have for themselves within three months, six months, and five years timelines. During their tenure in the program, they will meet weekly for case management, attend weekly cognitive, behavioral, and social-emotional groups, and nutritional webinars.

Who does your solution serve, and in what ways will the solution impact their lives?

The Center of Excellence will impact the 28.8% of people living with fibromyalgia in Puerto Rico. In addition, there will be a communal aspect to care as volunteers will be needed to assist with running groups and dietitians for nutritional webinars. This population is currently underserved as there is little known about fibromyalgia, including how to aptly diagnose and treat the condition. The COE seeks to also provide education for the medical field about the condition as it manifests in participants and key symptoms and occurrences to aid research and future understandings of the condition.

How are you and your team well-positioned to deliver this solution?

President and founder of the Fibromyalgia Care Society of America Milly Velez has over 25 years of working in the social services field. Diagnosed with fibro in 2007, she has dedicated time and energy to providing resources and fibro education since 2015.  

The Center of Excellence Program has already proven to instill in participants with better eating habits, incorporating more body movement, and mindfulness practices that have led to better pain management. The teams have the passion, dedication, and wherewithal to not only bring this program to fruition, but also ensure its longevity. 

Which dimension of the Challenge does your solution most closely address?

  • Support daily care management for patients and/or their caregivers
  • Enhance coordination of care and strengthen data sharing between health care professionals, specialty services, and patients
  • Empower patients with quality information about their conditions to fight stigma associated with rare diseases
  • Promote community and connection among rare disease patients and their advocates

Where our solution team is headquartered or located:

Montclair, NJ, USA

Our solution's stage of development:

Growth

How many people does your solution currently serve?

We currently serve over 20,000 individuals providing fibro education through social media, virtual newsletters, and the Fibro Friends Podcast.

Why are you applying to Solve?

Solve not only provides financial assistance but resources to ensure the success and maintenance of our Solve Solution. While the monetary award would provide us with the financial ability to provide laptops and access to video software, Solve can also provide advice, mentorship, and means to make and maintain connections in Puerto Rico. The COE also seeks to take data from the participants to educate the medical community about fibromyalgia manifestations in participants as well as compile a list of doctors who are competent in the diagnosing and treatment of fibromyalgia. 

Who is the Team Lead for your solution?

Mildred Velez

Page 3: More About Your Solution

What makes your solution innovative?

From the comfort of the participants' homes, they are able to meet with each other, their case managers, and receive nutritional education. The COE provides the participants with empowerment workshops where they learn interventions that decrease the fibro fog and pain as each group is designed to target social-emotional, cognitive, or behavioral aspects.

Traditionally, fibromyalgia has been cared for solely by the medical community. Our solution is unique as it involves an individual, whole body, whole person approach to care using technology which makes it accessible for people living with the condition --especially those home prone or home bound.

What are your impact goals for the next year and the next five years, and how will you achieve them?

Our impact goals for the year are as follows:

1. To build a strong team that will be committed to creating awareness about the disorder

2. To create awareness about fibromyalgia in at least 20% of the general population 

3. To graduate four cohorts that report a decrease in fibromyalgia pain 

4. To create a standard data system for those with the fibromyalgia condition 

5. To retain funders to support the program

 

 

Our impact goals for the next five years are as follows.

1. To at least have created awareness in 80% of the general population.

2. To build a resource and treatment center for fibromyalgia in Puerto Rico. This center will specialize in treating and providing information about fibromyalgia conditions.

3. To have a well-trained group of health workers that will specialize in treating fibromyalgia.

4. To have a well-detailed treatment prescribed for the condition.

We plan to accomplish this by establishing connections in Puerto Rico, publish and distribute educational materials, and establish relationships with local medical professionals.

How are you measuring your progress toward your impact goals?

For individual measurements of success, the COE has a seven-page document called “Journey Map” where we plot the course of the participants’ journey within the program. This map is completed by case managers and participants to collect demographic information and outline their goals for the next three months, six months, and five years. The goals follow the S.M.A.R.T. process-specific, measurable, achievable, relevant, and time-based. Included are risk and protective factors as well. 

What is your theory of change?

We believe in a holistic approach. When participants start the program they will complete a 7-page document collecting demographic information and naming three months, six months, and five-year goals.

 

The short-term goal is that by joining groups and implementing various interventions (eating, meditating, encouraging better eating habits, yoga)participants will start to notice differences in mood and lowering/increased management of fibromyalgia pain. 

 

The long-term goal is that participants are able to utilize the tools learned from the cognitive, social-emotional, and behavior groups and nutrition webinars to maintain the management of fibromyalgia pain.

Describe the core technology that powers your solution.

The core technology we will be using are laptops with integrated cameras as well as Zoom or any other video-based platform. In addition, we will utilize Docuwear “document management software providing repository and workflow automation functions, also referred to as enterprise content management or more recently content services(docuwear.com).” With this system, we are able to automatically populate documentation, follow-up appointments, meeting attendance, appointment reminders, and case management notes. Docuware provides technology-based efficiency in program documentation and management.

Which of the following categories best describes your solution?

A new business model or process that relies on technology to be successful

Please select the technologies currently used in your solution:

  • Crowd Sourced Service / Social Networks
  • Software and Mobile Applications

Which of the UN Sustainable Development Goals does your solution address?

  • 3. Good Health and Well-being
  • 10. Reduced Inequalities

In which countries do you currently operate?

  • United States

In which countries will you be operating within the next year?

  • United States
  • Puerto Rico
Page 4: Your Team

What type of organization is your solution team?

Nonprofit

How many people work on your solution team?

2 full-time staff, 2 part-time staff, 2 contractors, 3 interns

How long have you been working on your solution?

Two Years

What is your approach to incorporating diversity, equity, and inclusivity into your work?

Our team consists of primarily women (and non-binary person) of color. It is the mission of the Fibromyalgia Care Society of America to demonstrate that Fibromyalgia does not discriminate, but instead impacts people of diverse backgrounds.

Through our hiring process of looking through underserved populations first, especially to those for who English is a second language, we envision an organization filled with people of diverse backgrounds.

Page 5: Your Business Model & Funding

What is your business model?

Our model consists of a four-pillar program: a holistic approach, case management, nutrition, and aftercare via a virtual landscape. 

 

Clinical with a Holistic Approach

  • Weekly Empowerment Groups

  • Clinical Telehealth 1:1 sessions, driven by a Treatment Plan

  • Psychotherapeutic Group & Peer to Peer Mentor Support

Case Management

This pillar is critical to supporting clients with reaching short, mid, and long term goals including securing items they need to reach such goals. The Case Manager helps meet needs such as housing, food scarcity, disability benefits, identification documents, health insurance, navigating the medical system, education, employment, spiritual wellness, utilities support, legal assistance, etc. 

Nutrition

Since Nutrition is an essential part of leading a healthy and well-adjusted life, the participants will be provided with webinars conducted by dietitians explaining the importance of an anti-inflammatory diet and showcasing easy meals for folks living with fibro to cook (as it can become overwhelming with inflammation in the hands and feet).

Aftercare

This pillar is one of support, assigned to an ‘Aftercare Specialist’ who follows up with a caseload of clients who have completed the program. The specialist is driven by a Program Design Framework that allows them to continue supporting clients as they practice the skills attained in the Program Phase; also addressing any adversities that arise.

 

Do you primarily provide products or services directly to individuals, to other organizations, or to the government?

Individual consumers or stakeholders (B2C)

What is your plan for becoming financially sustainable?

In addition to providing technical assistance, the team at FCSA also plans to identify sustainable grants and donations for the virtual coordinated care program in Puerto Rico.

Share some examples of how your plan to achieve financial sustainability has been successful so far.

We have received a $25,000 grants from Healthcare Foundation of New Jersey and are funded by donations and fundraising. 

Solution Team

 
    Back
to Top