CMD Community Peer-to-Peer Match

CMD Community Peer-to-Peer Match
Would you like to connect 1:1 with someone in the community traveling a similar CMD journey?

Cure CMD has launched a new program designed to help facillitate peer-to-peer conversations about topics affecting all of us. You may have questions about managing early to secondary educational barriers, or about how to effectively advocate with your healthcare team. Perhaps you'd just like to talk to another person or family about their journey with CMD.

If you are interested in being matched with someone in the CMD community, please complete this survey!
Note: We are currently only accepting adults into the peer-match program.

If you are the parent/caregiver of a minor-aged child or teenager who would like to be matched with another affected kiddo around their age, please indicate their name and age in the comment section below.

If you are the parent/caregiver of an adult child who would like to be matched with another affected adult, please ask them to register separately. Thank you!
Your Name: *

First Name Last Name
Do you have a partner (spouse, co-caregiver, etc.) who would also like to participate?

First Name Last Name
Your Email Address: *
example@example.com
Your Phone Number: *

Area Code Phone Number
Your Partner's Email Address:
example@example.com
Your Partner's Phone Number:

Area Code Phone Number
Location: *

Street Address

Street Address Line 2

State/Province

Country
Timezone: *
Please indicate YOUR community affiliation (check all that apply): *

I am an affected individual I am the parent/guardian/primary caregiver of an affected individual I am the spouse/domestic partner of an affected individual I am the grandparent of an affected individual (not the primary caregiver) I am the sibling of an affected individual
Please indicate your PARTNER's community affiliation (check all that apply):

I am an affected individual I am the parent/guardian of an affected individual I am the grandparent of an affected individual I am the spouse/partner of an affected individual I am the sibling of an affected individual
Please indicate YOUR age: *

18-21 years of age 22-25 years of age 26-30 years of age 31-40 years of age 41-50 years of age 51-60 years of age 61 years of age or older
Please indicate your PARTNER'S age:

18-21 years of age 22-25 years of age 26-30 years of age 31-40 years of age 41-50 years of age 51-60 years of age 61 years of age or older
Your/Your loved one's CMD Subtype: *

Collagen VI (Ullrich-Intermediate-Bethlem, LGMDR22, LGMDD5) Collagen XII Dystroglycanopathy WITH cognitive impairment (ie. WWS/MEB/FCMD) Dystroglycanopathy WITHOUT cognitive impairment (ie. LGMD2I/R9, LGMD2K/R11, LGMD2M/R13, LGMD2N/R14, LGMD2O/R15, LGMD2P/R16, LGMD2S/R18, LGMD2T/R19, LGMD2U/R20, LGMDR24) LAMA2 (Merosin Deficient) LMNA (L-CMD/Laminopathy) SELENON (SEPN1/RSMD) Congenital Myasthenic Syndrome Myofibrillar Myopathy Titinopathy, LGMD2J/R10 Nemaline Myopathy RYR1-Related Myopathy Other LGMD (specify which type below) Undiagnosed
Please indicate "other" CMD/LGMD subtype.
Please indicate your affected child's birth year (YYYY). If you have more than one affected child, indicate all birth years, separated by commas. *
Affected Individual's Ambulatory Status: *
Affected Individual's Breathing Status *
Affected Individual's Feeding Status *
Please indicate the topics below for which you are interested in RECEIVING peer support: *

Newly diagnosed Care Concerns (specify in comments) Managing nursing/home health staff Managing primary school attendance/IEP/504 Transitioning to high school Transitioning to college Caregivers Self-Care/Mental Health Affected Individual's Mental Health Effectively communicating with healthcare team Legislative Advocacy Applying for/managing state and/or federal aid None of these, only interested in PROVIDING support
Please indicate the topics below for which you are interested in PROVIDING peer support:

Newly diagnosed Care Concerns (specify in comments) Managing nursing/home health staff Managing primary school attendance/IEP/504 Transitioning to high school Transitioning to college Caregivers Self-Care/Mental Health Affected Individual's Mental Health Effectively communicating with healthcare team Legislative Advocacy Applying for/managing state and/or federal aid None of these, only interested in RECEIVING support
Comments:
The views and/or advice expressed between peer-support matches do not represent the opinion of Cure CMD. Medical or legal opinions expressed or shared should not be substituted or interpreted as medical or legal advice. Please consult your healthcare provider regarding any health related concerns. *

I acknowledge and agree to this disclaimer.
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