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PANDA is a new foundation that my guy..Jim Adams and myself... Penny Volpe... have created with a few good friends....Those of you that know me for the almost 5 years I have been on this forum...that i have advocated in different ways for PD...most recently more so for the patient but this group will be for both patient and careigver....|
PANDA stand for:
Parkinson's Assistance Network, Directory and Alliance...Our mission statement is:
P – An organization to benefit and assist patients with Parkinson’s and/or Parkinsonism. (i.e. applicants must be diagnosed with Parkinson’s and/or Parkinsonism)
A – Assistance including, but not limited to, providing medicine, medical treatment, food, and other quality of life needs, will be made available via an application process for Parkinson’s/Parkinsonism patients. This assistance will be a “direct pay” system with monies going directly to the provider.
N – A Network of Parkinson’s patients and caregivers across the Nation will be formed. This Network will allow each recipient the opportunity to “pay forward” the Assistance they receive if it is within their physical or mental capacity.
D – A Directory of nationwide accessible resources will be created to enable Parkinson’s patients to access needed help: to include but not limited to, medical treatment, medicines, caregivers, food banks. A one-stop place to find resources in your community whether newly diagnosed or well into the disease.
A – An Alliance of patients, caregivers, medical professionals, and their community resources uniting together to enable a better quality of life for those diagnosed with Parkinson’s /Parkinsonism.
This group is Parkinson's driven...in other words there will never be at anytime someone on our board who has not dealt with this disease...either as a patient or caregiver....
Right now we are in our infant stage and trying to pull things together. WE have started our directory and are getting information and resources in almost all 50 states....
Our vision for the very near future is this:
We don't want any parkinson's patient or caregiver going without food, medicine, housing, electricity or any other necessity of life!!!!!
Other than the Hollyrod Foundation mentioned here on this site..and a few really small local groups...there is no big organization to aid in this area...and Hollyrod has shifted priorities.....
With an application process and a direct pay provider...we don't want people to do without like we have had to do ourselves.....
In order to prevent scamming by people ... as we have to think about that...we decided on the direct pay system. If after the application process, we find you eligible for funding we will directly pay the provider you are looking at paying.... for example....you are low on monies and you still need your sinemet or any other drug for the month...give us the name of your pharmacy, you call it in and we will pay that prescription for you....you need your light bill paid or heating bill paid....we will directly pay your bill...the recipient actually receives NO monies.... for food...we will first make sure you have applied for food stamps... or gone to any food banks or if you have no way to get to one...we will have someone deliver food to you...if these resources are depleted and some folks are just above the food stamp limit...we will give vouchers for food..... I myself am currently in talks with WalMart, as nationally they are everywhere....We are looking for a general voucher to go to the recipient with Walmart as the recipient of the monies....This voucher will not be allowed to be used for alcohol or tobacco...it is to be used for food items only...
Housing....we are looking at several groups to join in with us for this...if say your house needs a new roof and you have no monies...we want you to get a new roof as this is imperative for a "healthy" atmosphere....this is where the directory comes in...there are small non-profits local to many areas that already do this...it's just that many aren't tapped because it is unknown...
I have several caregivers working with me on a "switch for a day" caregivers network....kind of like moms do with babysitting...Some caregivers can give other caregivers a break.....like me...now that Jim's meds are working in full capacity and he is better off now than he was just a year ago... I can leave him for 8 hours if needed... I can go sit with someone else's spouse if needed....just for a day out.....There are also other caregivers who have lost their loved ones but still want to contribute somehow to those who need them.... it's amazing how many are out there!!!!
There are volunteer groups like : Helping Hands....this is a group of retired nurses who volunteer their time to sit with patients so a caregiver can get a break.....now as far as I know there are only 2 groups of those around me....but I am waiting for the results of our directory to be able to get a full listing of every conceivable help we can find....
I believe I have covered everything we will cover... I hope..lol
We do not have a website yet..it is being worked on by one of our volunteers...we call them "Boots on the Ground"
We do have a facebook page:
our temporary email is: firstname.lastname@example.org
If you have any questions please feel free to email us.
At this particular time we are still awaiting our 501(c)3 status so any donations at this point are not tax deductible and monies are at a stand still....believe me it is expected.....As soon as we have status... I am applying for grants and have a whole big crop of givers waiting in the wings....one thing i want to make clear here...I am not asking any of you for donations....i will ask of you...like i ask of all our Boots and recipients of funds...pay it forward....refer us ..in time....volunteer if you can....give us your time in a way you can...IF you can.....that's all....
oh yeah missed one thing...our board..
CEO - Jim Adams...(my guy)
Senior Vice President - Israel Robledo - Israel has been a PAN advocate as well as PDF...
CFO - Penny Volpe...(me)
Secretary - Penny Blankinship..newly diagnosed in January. She is a 7th generation East Texan with a penchant to "get 'er done"
Medical Chief Operations Officer - Dr. Maria De Leon is a now retired Movement Specialist diagnosed with PD, who also is involved with PAN and PDF
Advisor to CEO - Ron Czerniec - Ron also is diagnosed with PD. He went through the gene therapy trials (phase II) and found out recently he was given the placebo...he will soon receive the real thing through another trial and has started his own foundation called "Whip Parkinson's Now" which aids patients getting to clinical trials and is CEO of his own company....
That's us!!!! Again if you have any question feel free to email us or get with me here... i have checked the email replies...so hopefully i will know when someone has responded...
I want to thank personally all the folks from here who already have responded and are part of our BOOTS team.....we love you for it!!!!!!!!
I knew I would forget something..sorry|
It was mentioned in another post by LO..BUT...I mentioned the book by Bev Ribaudo called "Parkinson's Humor" ...Bev is a great friend of ours and is now donating ALL proceeds of her book to PANDA....
If you don't know of her...she took care of her dad who had PD and has had PD herself for years but only diagnosed about 5, I believe. She talks about her daily issues with PD in a most humorous way....she also does parody's of popular songs around the theme of Parkinson's...she even did a song about my Jim.....I tease her all the time saying she can't sing, even if her life depended on it BUT her humor in the songs goes above her singing...You can check her out on youtube...just put in the search Yuma Bev !!!!!!!
|God bless you for your efforts and God bless the volunteers who are helping.|