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 Valosin Containing Protein associated multisystem proteinopathy. 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.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Cure VCP Disease, Inc. was formed in 2018 to cure diseases related to valosin-containing protein (VCP) associated multisystem proteinopathy (MSP), also known as IBMPFD (Inclusion Body Myopathy, Early Onset Paget’s Disease of Bone and Frontotemporal Dementia). The disease can affect any combination of a patient's muscles, bones, and brain. For many years, patients, caregivers, and doctors have had no centralized support or resources for VCP disease. Without a centralized organization, patients and their doctors have been without support resources and care guidelines, and dedicated researchers have been alone in identifying patients for trials. There are no known cures or treatments for myopathy or dementia. There are less than 500 people currently diagnosed with this disease worldwide, but leading researchers believe that VCP disease is underdiagnosed.

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?

Patient Conference

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
Families
People with disabilities

Meeting 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
Adults

Cure VCP Disease is dedicated to supporting the efforts of new researchers looking to advance their VCP research.

Population(s) Served

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

Population(s) Served
Adults

Provide funding and patient insight in trial design for natural history study

Population(s) Served
Health

Equiping our patients with knowledge and support to deal with VCP disease and improve their quality of life.

Population(s) Served
Adults
Adults

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
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

People with physical disabilities, Chronically ill people

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

E-mail Subscribers to electronic newsletter

Number of unique website visitors

This metric is no longer tracked.
Totals By Year
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 broad goals of our organization are:
1. to improve the quality of life of VCP patients
2. to support the development of a cure and therapies for VCP disease

The specific objectives of our organization are:
1. to provide global education and awareness of VCP diseases to doctors, researchers, industry, 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.

1. Establish care guidelines and a network of clinicians for VCP disease.
2. Promote patient and family education and support through patient conference/webinars, online support groups, and educational resources.
3. Promote scientific collaboration through the VCP Scientific Focus Group and Scientific Conference.
4. Increase patient identification through global patient registry.
5. Fund and support natural history, research tools, and scientific research.

1. An educated, diverse, and motivate Board of Directors
2. Established fundraisers, donation platforms and accounting systems
3. Outreach tools such as 1200+ e-mail database, website, social media and printed resources
4. Organizational memberships
5. Strategic partners
6. Network of scientists and clinicians
7. A strong patient community

In 2021:
• Conducted the VCP Standard of Care Consortium with 50 clinicians.
• Hosted the VCP Scientific Conference with 90 scientists.
• Funded two natural history studies with strategic partners.
• Selected as a CZI Rare As One grantee.

In 2020:
• Launched a patient records collection through AllStripes.
• Launched our patient webinar series.
• Started a monthly VCP Scientific Focus Group meeting of pre-clinical and clinical scientists.
• Conducted FDA Patient Listening Session.
• Awarded first research grant through Uplifting Athletes Young Investigator Draft.
• Conducted twice a month VCP Happy Hours for a time of fellowship between patients and care partners.

In 2019:
• Joined NORD as a member.
• Conducted our first-ever patient conference on April 12-13, 2019 at Washington University in St. Louis.
• Attended Rare Disease Week on Capitol Hill. Exhibited at Rare Disease Day at the NIH.
• Distributed 2,000 patient brochures.
• Collaborating with leading researchers to assist them in clinical trials.

In 2018 (our founding year):
• 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.
• Joined Global Genes as a Foundation Alliance member.

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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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Cure VCP Disease, Inc.

Board of directors
as of 2/9/2022
SOURCE: Self-reported by organization
Board chair

Nathan Peck

Allison Peck

Bryan Van Brunt

Brandon Feldt

Amy Casey

Kelly Gold

Dave Kaminsky

Maureen Hart

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 02/09/2022

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, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

Equity strategies

Last updated: 09/02/2019

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. 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.