For Patients and Families

JOIN US IN ACCELERATING CURES

There is power in a strong community. Your participation, unique perspective, and talents are essential to the mission of finding a cure.

Consider joining us in the fight!

1. Complete the Patient Registry

The patient registry takes 20 minutes to complete and it is our most powerful tool in understanding how VCP disease affects patients. It is a critical first building block on our path to clinical trials and improved quality of life for patients.

2. Participate in Research

To sign-up in our natural history study, contact Lindsay Alfano at NMDtrialinfo@nationwidechildrens.org

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Enroll today in our patient-powered research projects. Your voice and participation can make a positive impact and advance the progress for a cure.

Biorepository Roadshow:

Interested in participating in biomarker research? COMBINEDBrain is traveling to a conference near you!

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Enroll in the Brain Donor Project:

You might be surprised at how many people don’t know that becoming a brain donor & the process of brain donation for research is a thing—a critically needed thing. It could help advance the science into our disease.

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3. Become a VCP Ambassador

The VCP Ambassadors are patients, friends and family members who want to volunteer and help us strengthen our community through events, outreach, and providing perspectives of living with VCP disease. This group meets every other month. For more information, contact us at info@curevcp.org.

4. Host a Fundraiser

Fundraising events are fun and impactful. Funds raised are critical to supporting our research and patient projects. We have resource kits and materials to help you. Contact Leah@curevcp.org for more information.

5. Share Your Story

Your story is powerful and can help others who are also on this rare journey. Share your story with a friend, with a family member, or through social media. We would love to add your story to our collection of VCP rare warriors.

TAKE CONTROL OF YOUR HEALTH

If you or a loved one has been diagnosed with a mutation in the Valosin-Containing Protein gene, we are here to help. Founded by a group of families affected by this rare disease, Cure VCP Diseases understands and wants to help you as you navigate this journey. Please know that we are here to work towards a better future for you and your family.

In addition to supporting research, there are things that you can do right now.

1. Monitor your Health with a Team of Doctors

There is no cure yet, but doctors can help you with symptom management, disability qualifications, device recommendations, prescriptions, and healthcare maintenance. Led by Cure VCP Disease and a team of international experts, these guidelines are designed specifically for VCP patients for all the different symptoms a VCP patient may experience. Your care is important, and it is vital for you to form a care team.

Take these guidelines to your next doctor's appointment.

https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02172-5

2. Find a VCP Doctor

As a resource for our patients, we have compiled a list and map of physicians and therapists familiar with VCP disease. This map was created to help patients find specialists in their region and beyond. It is a constant work in progress updated through participation with our organization and references from patients.

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Image of map identifying locations for VCP Doctors

3. Find a Support Group

No one should have to cope with this disease alone. Get plugged in to our VCP community. We regularly host patient and family events and online support groups. There are many ways to connect:

Join the VCP Disease group on our monthly happy hours and educational webinars.

Get the invitations to our events and notified of new research through our monthly newsletters

For patients and caregivers, there is a closed facebook group. This group is set-up to for families to share anything . . . dietary suggestions, mobility aids, as well as stress relief. It is private and membership is monitored @Ibmpfd - Patients, Family, and Friends

For caregivers, the myositis association has invited caregivers to join their caregivers only facebook page.

4. Genetic Diagnosis

Genetic testing is the only conclusive way to establish an accurate diagnosis of VCP disease (also known as multisystem proteinopathy). Receiving a genetic diagnosis has many advantages, but pursuing genetic testing can be stressful. The right time for genetic testing is a personal choice as psychological, financial, and social factors must be considered. Family consultation with a genetic counselor before and after genetic testing is recommended.

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