United Brachial Plexus Network

Hello all:

In case you don't know me, my name is John Anthony Ferrado, and I have a little boy Matthew, who is severe ROBPI, with 3 full avulsions and one partial avulsion. He's had both primary and secondary surgeries at TCH under Dr. Nath, and I've been on the message boards here at UBPN off and on since his traumatic birth. You might notice that my username is "angryparent" and those of you who know me know that I certainly started out quite "angrily", but my anger has turned to resolution and dedication, and I am using this energy to do whatever it takes to educate our politicians, the CDC and the AMA about this horrific injury, the lifetime nature of the injury, and it's devastating, lingering effects.

I am now actively working with UBPN on the In Touch committee for the National Proclamation toward recognition of the Brachial Plexus Injury, and I need your help. I would like to coordinate a concerted, organized and relentless campaign to contact EVERY SINGLE congressman, congresswoman, and senators of EVERY state - until we get the results and changes that our children & BPI victims desperately need. To that end, I am looking for one, preferably two "State Ambassadors" for every state, who have the time and dedication to take this on and be a part of our In Touch campaign. I am in Florida, and I will coordinate the effort for this entire endeavor.

I am looking for volunteers to e-mail, phone and write the correlating representatives for that persons state. I will show you where to find the information, as they have websites that provide everyone with the ability to contact them in each mode: Phone, mail and e-mail. E-mail is quick but somewhat less effective. Regular mail is slow, but more effective, and phone calls are quick and effective. Using all the above, in repeated and consistent measures, will definitely get noticed.

It is my opinion that if every representative starts to get "inundated" with concerned parents, we'll start to see results. This is not going to be easy, quick or immediately effective. But persistence, relentless activity, and an organized effort will eventually, get results.

I will draft a series of letters to be approved by the board of UBPN for you to forward, and scripts for phone conversations as well. I have already written once to Dr. Bill Frist, the Senate Majority Leader. You can view that letter on the thread, "My Letter to Dr. & Senator Bill Frist" in the general message board. I will draft letters similar to this one for this effort for everyone to use.

Individually, we don't stand a ghost of a chance to be heard. Working together in a highly organized and relentless fashion, we WILL create change in how this injury is viewed, evaluated, prevented, treated, and how it is related to by the government, insurance companies, and especially, the medical community.

Here is my information:

John Anthony Ferrado
1420 Tim Court
Port Orange, FL 32129-7407

e-mail: crow63@yahoo.com

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

Please feel free to contact me at any of the above numbers. I am in my office most of the time, and that is my direct line. I am a Financial Advisor with Morgan Stanley, and that is how I answer my phone. I hope to have this effort underway before the summer is over, so please contact me ASAP. E-mail usually takes me about 2-3 days to respond, so my office phone is best. I appreciate anything that any volunteer can do. I look forward to hearing from you
all!

God Bless,

John Anthony Ferrado

John,
Count on me for Washington state!
Carolyn Jenkins
scottcj98406@comcast.net

God bless you and every one who volunteers for you with this project!
Have a great day!!

Hi! i'm ruth stark and i have a ROBPI. I'm 14 and i had my first surgery this past April. My mom (Nancy) has been my biggest advocate and we are very interested in being the ambassadors for the state of kansas. My mom and I have always wondered if there was anything we could do for other children with this injury and if we could inform/prevent BPIs in the future! this sounds like a great opportunity! thank you for organizing!

God Bless,
Ruth and Nancy

Dear Ruth,

I think it is wonderful that you would assist us in trying to get the word out on this injury!! I would love to have you and your mom on board. Consider yourselves State Ambassadors for Kansas. I hope your surgery and continuing treatment is going well!!

Please e-mail me the personal contact information for the both of you, including phone, address and e-mail.

I am just setting up the State Ambassador infrastructure, and once that is complete, we will be ready to go.

Please feel free to contact me directly if you have any questions.

Thanks for your help on this effort!!

Sincerely,

John Anthony Ferrado
1420 Tim Court
Port Orange, FL 32129
crow63@yahoo.com
Office 386-615-3407
Cell 386-679-9327
Home 386-788-9675

YAY!! We are very excited! thank you again!

Ruth Stark and Nancy Stark
5600 Mission Rd.
Fairway, KS 66205

astark2@kc.rr.com

home-(913)-384-2304
Nancy Cell-(913)-961-3352
Ruth Cell-(913)-961-0705

Ruth & Nancy,

You're all set. Look for a communique sometime over the next 2-3 weeks. We're now up to 12 States, and the effort is just beginning.

Again, thanks for your participation!!

Godspeed,

John Anthony Ferrado

Moving this to the top

Kathleen Mallozzi
In Touch Chairperson

Thanking John for taking on this huge task for UBPN and all of us.

HERE! HERE! Thank you too,again,John. You are doing a great service for all of us. I believe we should keep this topic at the top until John says "enough"...just my "2 cents"....
Carolyn

Update:

Just a quick update folks. I am in the process of finalizing the letters & E-mails, after which I will finish the follow-up phone talking points.

I have had a longer delay due to a move we are making from our current home in Florida. We will be moving to a better home in Palm Coast, Florida. Inevitably, this has resulted in a slowdown of some of my other endeavors. I am still resolved to get this effort off the ground by August 1st, so my plan is still on schedule.

Anyway, we could still use more volunteers, so keep the word going out!!

Thanks to all that have volunteered so far!!

Sincerely,

John Anthony Ferrado

COUNT ME IN FOR THE STATE OF LOUISIANA!!! My daughter, Zavian, has a lobpi and we are with you 100%!!!