United Brachial Plexus Network, Inc.

Roll Call of volunteer State Ambassadors(sp??):.....
Carolyn J,Washington State

John,
....An After thought due to a senior moment& hunger for lunch....how about posting also on the TBPI Board just in case some adults don't go to the General Message Board? There is also a web site forErb's Palsy called: erbs@topica.com that parents of children with OBPI post on. I was logging on there a few months before I found UBPN.
Sorry mom duty is calling me for the rest of the day and I don't have time....
Carolyn

I'm a high school government teacher and mom of a ROBPI 16 month old girl. I teach a whole unit on persuading legislation (lobbying, contacting congressmen, interest groups etc..) I suggest 2 things.
1. You have 4 - 5 specific goals clearly stated of what you want the congressmen to do. or 4- 5 specific laws you want added or changed.

2. You actually start an organization with a name or acronym and purpose. (ex. MADD). It makes it easier to raise funds, create awareness, and promote your cause.

What your doing is great. The letters you wrote were good but like you said, they won't respond to one person, but a group of dedicated, adamant people might get their attention.

Count me in for Texas!

Just let me know what to do from here!

Cherie
mom to Sarah - ROBPI

Hello all:

Here is a list of states in which we have ambassadors. I will not limit the amount of ambassadors we have per state, as the more we have in EACH state will certainly bolster the chances we have for some type of response from the state's leaders.
I can tell you now, that we have the following states participating:

Florida (3)
Texas (3)
Colorado (1)
Arizona (1)
Washington (1)
New York (1)
Ohio (1)

This is a good start, though with 7 states accounted for, and 50 states remaining, we certainly have our work cut out for us. However looking to the bright side, as I always do, I like the fact that we're getting results. I simply cannot thank each of you enough, and please know that I will support each and every one of you in any way humanly possible during this effort. I will be working on scripting the letters, a series of 12, which will also be used in e-mail format. I will also create talking points for phone calls, and each of these will be pre-screened and pre-approved by the board of the UBPN prior to release.

For now, we will continue in our recruitment efforts. I would ask each and every one of you to try to talk others into joining our effort, even if they are in your own state. Rather than limit the ambassadors, I feel we can make an even greater impact if we flood one particular state with ambassador's letters and communications.

Once we have the infrastructure as best we can by Mid-July, then I will contact everyone on how to find their representatives. It is so easy, it is almost comical. Thank the lord for the internet.

So let's get as many people on board as we can over the next 2-3 weeks, so that we'll have our ducks in a row - letters, e-mails & scripts in hand, ready to launch by August 1st. From that date on, the assault begins. The first e-mails, letters and phone calls go out. We'll mail the letters and e-mails August 1st, and follow up with a phone call around August 15th. We may even begin earlier than that depending upon how fast this comes together. Then, each month, the same thing, with different letters & e-mails. Then the calls two weeks later.

I can write effective letters in a very quick manner, and of course, your opinions and ideas are more than welcome.

Let's keep the volunteers coming, and I'll be continuously informing everyone on the status of our campaign as we go through the process.

Again, thanks and Godspeed to you all!

Sincerely,

John Anthony Ferrado

Cherie,

Thanks for your support and participation. What I need from you is your phones and address for contact purposes. So far, we have yourself, Janet Mefferd, and Angela Demar in Texas. I will ask all volunteers in each state to contact one another, so we can coordinate our efforts in a concise and organized manner. I know through my contact with Janet, that you two already know eachother, so this will be even easier.

Again, thanks SO MUCH for your help!

Thanks again,

John Anthony Ferrado
1420 Tim Court
Port Orange, FL 32129

Office 386-615-3407
cell 386-679-9327
Home 386-788-9675

Carolyn,

I have posted this on each of the three forums here, but I like the other site you discussed. I will attempt to check it out. I haven't gotten any responses from those on the other forums....FYI.

Again, thanks to all.

Sincerely,

John Anthony Ferrado

Dear BV

John is undertaking this project for UBPN as a member of the In Touch team...
UBPN is a recognized support network for Brachial Plexus Injured and in fact the only active one in the US. We have been working towards this goal we are established and ready to go for this next step.

The United Brachial Plexus Network, Inc. (UBPN.org), is a 501c3 non-profit organization this project is part of UBPN's efforts to bring Awareness and make changes.. as per our Mission statement.

Kathleen Mallozzi
In Touch Chairperson UBPN

Dear B.V.

As Kath said, we have the organization in place, and we are ready to go. I'd LOVE To have you on board this effort if at all possible. Your experience and ideas would be a great addition to our effort, and I have found that we can always improve on what it is we try to do on a daily basis.

We do have clear and specific measures for our politicians to implement, including:

1) Funding for long-term studies of the injury
2) Classification and inclusion of the injury for long-term evaluation and study by the CDC
3) Acknowledgment of responsibility by the AMA
4) Classification and inclusion of the injury as a lifelong disability for SSI payments
5) Mandatory training for prevention, evaluation, treatment and awareness by the AMA
6) Long term studies on the effects of Pitocin (Oxytocin) and statistical incidence to shoulder dystocia and BPI

These issues, despite their specificity, are still broad strokes. However they clearly spell out what I believe is needed to reduce the occurrence and ignorance of, this devastating injury.

This effort, combined with the standing of UBPN, should allow us to effect some type and level of change by our legislators.

I hope this helps to clarify our efforts. Again, we'd love to have you on board. Your input would be greatly appreciated.

Thanks and Godspeed,

John Anthony Ferrado
1420 Tim Court
Port Orange, FL 32129

Office 386-615-3407
Cell 386-679-9327
Home 386-788-9675

Sign me up for New Jersey!

Michelle Svetlitski