CurePSP Peer Supporter Survey

The CurePSP Peer Support network is comprised of a group of individuals who have a connection to progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA) and are willing to offer their direct support to those who are currently diagnosed or have a loved one with a diagnosis. This may happen over the phone, by email, or through in-person meetings. As opposed to a support group, peer support offers an intimate one-on-one connection to share experiences, offer practical tips, and guide to critical resources to stay proactive throughout this journey.

Thank you for your interest in becoming more involved with CurePSP and for taking the time to fill out this short survey about your role. We ask that you read through the survey in its entirety. We appreciate your commitment to serving those with PSP, CBD and MSA and value your time and energy greatly. Gathering this information will help us get to know you, and ensure that we are serving the CurePSP community to the best of our ability!

Please reach out to advocacy@curepsp.org with any questions!

Question Title

* 1. Contact Information

Full Name (First Name, Last Name) *

Address *

Address 2

City/Town *

State/Province *

ZIP/Postal Code *

Country *

Preferred Email Address *

Preferred Phone Number *

Question Title

* 2. CurePSP Peer Supporters network involvement

I would like to be a peer supporter

I am interested in learning more about the peer support program

I am looking to get involved in a different area of CurePSP volunteerism

Other (please specify)

Question Title

* 3. I am a(n) (check all that apply):

Patient with a diagnosis of PSP, CBD or MSA

Current carepartner/spouse of someone living with the diagnosis

Carepartner/spouse of someone who has passed

Adult child of someone living with the diagnosis

Adult child of someone who has passed

Other family member (not spouse/child)

Other (please specify)

Question Title

* 4. The diagnosis that I have/had personal experience with is (check all that apply):

PSP

CBD

MSA

Other (please specify)

Question Title

* 5. Please tell us a bit more about the person diagnosed with PSP, CBD or MSA:

Name

Relation

Date of diagnosis

Date of symptom onset

Date of death (if applicable)

Question Title

* 6. Is there a time of day or day of the week that you most prefer to be contacted?

Question Title

* 7. The topics that I feel most comfortable speaking on/most interested in (check all that apply):

Adaptive equipment/wheelchairs

CurePSP resources/webinars

End of life/bereavement

Financial planning

Hospice/palliative care

Importance of speech/physical/occupational therapy

Levels of care/hiring a caregiver

Local resources - facilities/doctors

Navigating a new diagnosis

The benefits of attending a support group

Other (please specify)

Question Title

* 8. What language(s) do you speak?

Question Title

* 9. Rate your level of commitment to the CurePSP Peer Supporters Network.

1: I am committed to answering phone calls and emails from families in a timely fashion and am willing to share my hard-earned knowledge and disease experience with those in need.

2: I am committed to be a “point person” in my local area for families in need by maintaining a knowledge base of local resources and support groups.

3: I am committed to “going the extra mile” for families in need by helping them navigate their disease journey through periodic check-ins, maintaining a high level of knowledge around CurePSP resources and offerings, and report back to CurePSP staff and Patient & Carepartner Advocacy Committee with feedback to help build out our support offerings and resources.

OFFICE HOUR

The CurePSP 'Office Hour' series is a bi-monthly meeting for our network of volunteers to keep you updated on the newest resources, support offerings, research trials, and educational events. The information shared will help you further support those who reach out to you looking for information and give you a chance to connect with other volunteers. We ask that every Peer Supporter attend at least two sessions per year and would be grateful to see you at all six!
Please click here to register for the series
(The registration will open in a new page and will not lose your place on this survey)

Question Title

* 10. AGREEMENT - I understand that as a CurePSP Peer Supporter I am required to:

1. Attend at least two sessions of “Office Hour” (one Tuesday every other month from 4-5 pm ET) annually

2. Respond to any inquiries from families in need within 7 days and refer them directly to CurePSP if they need additional support or information

3. Maintain a basic level of understanding regarding CurePSP educational materials, resources and state of research and clinical trial options

4. Allow my name, phone number, email, and basic personal information regarding my relationship with PSP, CBD or MSA to be shared on the CurePSP website, over email, and by word of mouth.

I understand that if I fail to meet these three requirements, I may be removed from the CurePSP peer support network. I may choose to be removed from this list at any time by notifying a CurePSP representative.

Your dedication, experience, and willingness to help others in their time of need is at the core of this foundation’s mission. Your agreement to fulfill these requirements helps ensures that CurePSP can fulfill its mission in helping to provide the best possible care and support to those with PSP, CBD and MSA. Signing this agreement helps us maintain the standard of care and commitment we have made to our patients and their caregivers. Thank you for all you do and continue to support the mission of CurePSP.

CurePSP Peer Supporter Survey

Question Title

* 1. Contact Information

Question Title

* 2. CurePSP Peer Supporters network involvement

Question Title

* 3. I am a(n) (check all that apply):

Question Title

* 4. The diagnosis that I have/had personal experience with is (check all that apply):

Question Title

* 5. Please tell us a bit more about the person diagnosed with PSP, CBD or MSA:

Question Title

* 6. Is there a time of day or day of the week that you most prefer to be contacted?

Question Title

* 7. The topics that I feel most comfortable speaking on/most interested in (check all that apply):

Question Title

* 8. What language(s) do you speak?

Question Title

* 9. Rate your level of commitment to the CurePSP Peer Supporters Network.

Question Title

* 10. AGREEMENT - I understand that as a CurePSP Peer Supporter I am required to:

Question Title

* 11. By signing your full name here, you are agreeing to all of the items outlined in the agreement above:

Question Title

* 12. Please use this space to leave any questions, comments or feedback for CurePSP!