Cure VCP Disease, Inc.

Together We Can Make A Difference.

AMERICUS, GA   |  www.curevcp.org

Mission

Cure VCP Disease, Inc. was formed to drive efforts to cure diseases related to mutations of the Valosin Containing Protein gene. This includes the disease Inclusion Body Myopathy associated with Paget’s disease of bone and Frontotemporal Dementia (IBMPFD). The specific objectives of our organization are: 1.) to provide global education and awareness of VCP diseases to doctors, researchers, investors, patients, caregivers and the general public; 2.) to develop and maintain a global patient registry of VCP disease patients; 3.) to develop and maintain a fundraising vehicle to support awareness and education efforts; 4.) to sponsor, host and/or participate in events and activities that promote efforts to cure VCP diseases.

Ruling year info

2018

CEO

Nathan Peck

Main address

263 LAKESHORE DR

AMERICUS, GA 31719 USA

Show more contact info

EIN

82-4368871

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Cure VCP Disease, Inc. was formed to drive efforts to cure diseases related to mutations of the Valosin Containing Protein (VCP) gene, a rare genetic disease that affects a patient's muscles, bones, and/or brain. This includes the disease Inclusion Body Myopathy associated with Paget’s disease of bone and Frontotemporal Dementia (IBMPFD). For many years, patients, caregivers, and doctors have had no centralized support or resources for VCP disease. Without a centralized organization, patients with VCP disease have been educating their doctors about the disease, and dedicated researchers have been alone in identifying patients for trials. There are no known cures or treatments for myopathy or dementia, but there is an approved treatment for Paget's disease of bone. There are less than 500 people currently diagnosed with this disease worldwide. Leading researchers believe there may be significantly more patients with this mutation, but they are being misdiagnosed as MS, MD, ALS ...

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Distribute Patient Brochure

Print and distribute educational brochures to patients and providers about VCP Disease.

Population(s) Served

We held a patient Conference in April 2019 with 60 in attendance. There were 6 scientific sessions, 1 patient panel, 4 practical/ therapy sessions.

Population(s) Served

Meeting of 20-30 of the world's leading VCP researchers, clinicians and scientists to discuss the state of VCP research today and setting a research agenda and goals for the future.

Population(s) Served

Cure is dedicated to supporting the efforts of new researchers looking to advance their VCP research. Several small "seed" grants are available.

Population(s) Served

Global Patient Registry to identify the global patient population and track the disease progression.

Population(s) Served

Where we work

Affiliations & memberships

Global Genes 2018

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of overall donors

This metric is no longer tracked.
Totals By Year
Population(s) Served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of list subscribers

This metric is no longer tracked.
Totals By Year
Population(s) Served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of unique website visitors

This metric is no longer tracked.
Totals By Year
Population(s) Served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The specific objectives of our organization are:
1. to provide global education and awareness of VCP diseases to doctors, researchers, investors, patients, caregivers and the general public;
2. to develop and maintain a global patient registry of VCP disease patients;
3. to develop and maintain a fundraising vehicle to support awareness and education efforts;
4. to collaborate with other global organizations and entities which are promoting a cure for diseases which have symptoms similar to VCP diseases;
5. to sponsor, host and/or participate in events and activities that promote efforts to cure VCP diseases.

Cure VCP, Inc.’s primary focus will be to grow our awareness and education campaigns.
1. We plan to exhibit at more medical conferences to bring awareness of our disease to the Neurology, Rheumatology and Endocrinology medical communities. For example, we had great success in reaching over 200 doctors at the Florida Society of Rheumatology. To minimize cost and travel, we plan to target medical conferences that are affordable and are within driving distance to our Board Members.
2. Our tri-fold brochure explains the disease, symptoms, diagnosis and support available for VCP disease. Initial feedback from the brochure has been positive and has encouraged at least one patient to get tested.
3. We hosted a patient conference April 12-13, 2019 at Washington University and will offered video on our website.
4. Provide support and resources for patients through webpages, digital newsletters, and facebook.
5. Fundraise through individual efforts, facebook, Network for Good, and Amazon Smile.

Our Board of Directors and Medical Advisory Team are educated, motivated and active. Two of our Board Members can design and manage webpages and digital marketing campaigns. One of our board members was a drug rep with medical connections, and all of of Board members are familiar with the disease.

For four of our goals, we are specifically utilizing these strategies:
1. Exhibits: To minimize cost and travel, we plan to target medical conferences that are affordable and are within driving distance to our Board Members.
2. Brochures: We have a volunteer team in place who will be collecting contact information and calling doctor offices to gauge interest in receiving our brochure. We are also working with the MDA and doctors familar with the disease for references.
3. Conference and Education: We have the support, knowledge, network, and resources of our medical advisors. They are leading VCP Disease researchers, Dr. Chris Weihl, Dr. Ming Ghou, and Dr. Virginia Kimonis.

In our first year, we have:
• Created a new webpage at www.curevcp.org to aggregate disease specific information and resources together.
• Distributed a digital newsletter to over 100 advocates/patients and over 150 doctors.
• Created a patient registry, hosted by CoRDS, to capture research data of all those afflicted with IBMPFD. We have begun collecting patient data.
• Created an informational brochure to distribute to patients and doctors.
• In July 2018, exhibited at the Florida Society of Rheumatology 2018 Annual Meeting

In 2019:
• Joined Global Genes as a Foundation Alliance member. Attended Global Genes Conference in October of 2018.
• Have registered to exhibit at the ANA Conference in Atlanta where 2,000 neurologists are attending.
• Actively planning our first ever patient conference on April 12-13, 2019 at Washington University in St. Louis.
• Attended Rare Disease Week in Capital Hill.
• Two board members will be attending the 2019 Global Genes conference in October.
• Distributing at least 2,000 more brochures
• Collaborating with leading researchers to assist them in clinical trials.
• Funded $10,000 in Rearsearch

What's Next
• Creating an outreach video to encourage more people to register on our patient registry.
• Working with researchers and legislators to establish VCP Centers of Excellence / Natural History Study.
• Planning for our next Patient Conference and a Global Scientific Conference.

Financials

Cure VCP Disease, Inc.

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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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Cure VCP Disease, Inc.

Board of directors
as of 6/1/2020
SOURCE: Self-reported by organization
Board chair

Nathan Peck

Jeannie Macaluso

Allison Peck

Eduardo Pinheiro

Sujata Patel

Renee Goff

Bryan Van Brunt

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 11/10/2019

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male
Sexual orientation
Decline to state
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

Equity strategies

Last updated: 09/02/2019

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.