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

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

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

Area CodePhone Number
Location:*

Street Address

Street Address Line 2

CityState/Province

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

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

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

18-21 years of age22-25 years of age26-30 years of age31-40 years of age41-50 years of age51-60 years of age61 years of age or older
Please indicate your PARTNER'S age:

18-21 years of age22-25 years of age26-30 years of age31-40 years of age41-50 years of age51-60 years of age61 years of age or older
Your/Your loved one's CMD Subtype:*

Collagen VI (Ullrich-Intermediate-Bethlem, LGMDR22, LGMDD5)Collagen XIIDystroglycanopathy 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 SyndromeMyofibrillar MyopathyTitinopathy, LGMD2J/R10Nemaline MyopathyRYR1-Related MyopathyOther LGMD (specify which type below)UndiagnosedOther
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 diagnosedCare Concerns (specify in comments)Managing nursing/home health staffManaging primary school attendance/IEP/504Transitioning to high schoolTransitioning to collegeCaregivers Self-Care/Mental HealthAffected Individual's Mental HealthEffectively communicating with healthcare teamLegislative AdvocacyApplying for/managing state and/or federal aidNone of these, only interested in PROVIDING supportOther
Please indicate the topics below for which you are interested in PROVIDING peer support:

Newly diagnosedCare Concerns (specify in comments)Managing nursing/home health staffManaging primary school attendance/IEP/504Transitioning to high schoolTransitioning to collegeCaregivers Self-Care/Mental HealthAffected Individual's Mental HealthEffectively communicating with healthcare teamLegislative AdvocacyApplying for/managing state and/or federal aidNone of these, only interested in RECEIVING supportOther
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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