Disease, Disorders, Medical Disciplines

Cure VCP Disease, Inc.

Together We Can Make A Difference.

AMERICUS, GA

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

2018

CEO

Nathan Peck

Main Address

263 LAKESHORE DR

AMERICUS, GA 31719 USA

Keywords

Advocacy

EIN

82-4368871

 Number

7759518668

Cause Area (NTEE Code)

Nerve, Muscle and Bone Diseases (G50)

IRS Filing Requirement

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

Social Media

Programs + Results

What we aim to solve

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

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

SOURCE: Self-reported by organization

Distribute Patient Brochure

Patient Conference

VCP Scientfic Conference

Research grants and travel stipends for young VCP researchers

Patient Registry for VCP Disease

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of overall donors

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

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

TOTALS BY YEAR
Population(s) served

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

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.

Progress indicators would be to grow the number of patients and doctors aware of the disease and give them information on how to manage the symptoms. Another progress indicator would be to have progress towards a cure by having new drug trials. This progress could be measured by 1. The number of patients enrolled in the Patient Registry. 2. The number of people reached and engaged through mailchimp, our digital newsletter. 3. The number of people who visit the webpage and facebook. 4. The number of patient brochures distributed. 5. The number of new people diagnosed with the disease who previously did not know what was wrong with them. 6. Progress towards launching drug trial(s) for a treatment and cure.

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 • 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. Our upcoming plans: • Two to three of our 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. • 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.

External Reviews

Affiliations & Memberships

Global Genes 2018

Photos

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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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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?

Not Applicable

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & 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

Who works and leads organizations that serve our diverse communities? This organization has voluntarily shared information to answer this important question and to support sector-wide learning. GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

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

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

done
We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
done
We have community representation at the board level, either on the board itself or through a community advisory board.
done
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.