Peripheral Neuropathy Support Group
 of the
DC Metro Area

No Cure
No "Race for a Cure"
But Hope, Advice, Info
      Mutual Support &
      Being Heard?
Yeah, We got that.

DC Peripheral Neuropathy Support Group

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Operational Stuff - internal aspects of the workings of our group
Last update: 1/22/18
Latest: new sub-pages 

New: I've have been working on our membership feature. We now have Security questions about member sign-in.
Money, Money, Money

Do we (our support group) need more money? Well, yes, but not much.
Does the fight against Peripheral Neuropathy need more money?
Of Course! But first it needs national awareness, then the money will come.
We, our support group, can't give a lot of money, but we can spread the word.
Managing our Cash - we sometimes need to spend real money. We use the pass-the-hat method.  We're not very good at it, but getting better. For the last two meetings, Bob McCabe has been our Pass-the-Hat guy. We haven't had the courage to ask him to be Treasurer yet - afraid to blow a good thing, I guess


Do we need a 501(c)3 status?
     To be a small support group: No.
    
To reach more people with PN: probably yes.

Process, budget and transparency. To get a 501(c)3 we need these things:
  • Process? How do we ensure that the group supports our spending actions? How do we track money or reimburse in-kind contributions. How do we recognize those who contribute? In a small group, process needs to be light-weight and clear
  • Transparency? Look at the Money sub-page to see my first stab at it.
  • Budget? Budgets are plans. They represent what we want to do with accumulated savings and future commitments of volunteer time and money. Here are some areas (the Money sub-page has more detail):

   - (Money) Audio-Visual equipment

   - (Time & Money) Refreshments

   - (Time & Money) Communication: Webpage and Internet

   - (Time) Contacting members and handling inquiries

   - (Money) Handout materials

   - (Time & Money) Spread-the-Word

   - (Time) Speakers (we haven't spent much money, but that could come)

Membership? Pledges? Recognition?

Site Membership
Site membership gives you "benefits":
(1) Ability to see other members, including public profile data (if any), such as member photos.
(2) Ability to privately message with other members, without revealing contact data
(3) access to the private "MemberStuff" page. For now, that's essentially empty, but maybe we'll find a use for it.
(4) Ability to comment on blog entries. No one has done that yet,

I (Mike the Admin, AKA Mike Foxworth) have been working hard on our membership feature.  There are still some aspects I don't understand, but I've made some progress.

We're just a support group.
When you come you contribute.
Your words, questions, sharing, smiles, frowns, puzzled looks. Your effort to travel and grace us with your physical presence. Any of that is valuable to the rest of us. 
Your emails, phone calls and visits with leaders and each other. All good.
If we ever start a Skype-like remote sharing capability, your call-ins will help. 

If you come once, we think of you as a possible member. If you come more than once we think of you as a member. If you give us an email address (phone numbers are good too but take more of our time to use) we will keep treating and thinking of you as a member until you tell us not too. [Terminology Note: This website supports something called "site membership", but that is completely separate from being a member of the group. Being a web site member gives you access to certain things on this web site, whether you are a member of the group or not. Naturally, most site members will also be group members. We haven't decided about the secret decoder rings yet.]

QUESTION: Do we want to have a special class of "member" where we recognize (internally and/or externally) that someone has significantly contributed to our group or some other neuropathy-related group? 
Contributions such as money, in-kind contributions, service, research or faithful attendance?

The Foundation for Peripheral Neuropathy, the Texas Neuropathy Alliance and, I'm sure, many other groups in this neuropathy fight, all have "memberships" based, at least partially, on money contributions. In some cases, the designation "member" can expire. We have no intention of expiring your your membership, any more than membership in a typical religious organization expires.

A gr
oup like ours will always run on the energy of its volunteers. But, if we ever want to push our group to a higher level of service, we will need money. We will need a 501(3)c tax designation and the organizational structure required by that. We will need pledges of money and an operational structure that handles that money in a transparent way.

So, as an organization dependent on volunteers, do we want to offer some way to give "official" recognition to those who seem to contribute? In a typical religious organization no one other than the finance committee (in particular, none of the leaders or other staff) know who contributes money.  Anyone who volunteers for a service project sees the others who come and work. But some contributions are completely hidden from others. People are different and "recognition" can be a powerful motivation or a complete embarrassment. When someone says they like this web site I feel a thrill of acceptance. My vanity is stroked. It's powerful motivator. I wear my "I Voted" sticker all day after voting.  Should we have recognition? How about a badge of honor for those who give to the Foundation for Peripheral Neuropathy?


Things to think about as we go forward.
Web Page Status (see the sub page for details)
New site name: dcpnsupport.org
Site Membership: 
I'm trying to get the "membership features" of this website implemented. These builtin features are available.
    1. Edit profile info, visible to other members, in order to share news or suggestions
    2. Access member-only site pages (not that there is anything there yet)
    3. Comment on blog posts. Or write your own.
    4. Lookup other users and communicate with them.  Can share using either comments shared with the group or via a private email system that does not require sharing email addresses.
    5. Invite others to join.
    6. Have a part in leading either this group or future other groups in the area.

We now have a Members Only page where I will (eventually) post less-public stuff, such as photos.
Site Visibility: Is this site visible when searching on the Internet? Yes.
Search results: good and not so good
Sign-Up Genius
For the July Pot Luck we tried out a internet tool (Sign-Up Genius) that sends emails with links to a web site that allows people to volunteer for tasks or gifts or to answer invitations or questions.  For more info, see our Sign-Up Genius sub-page.