Cure VCP Disease, Inc.

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.