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Topic OPINIONS PLEASE on PD Fund raiser Go to previous topic Go to next topic Go to higher level

By carolac On 2010.02.28 21:23
Hi-This is my first post. My Dad had Parkinson's & since he passed away, I've wanted to raise money for PD. An opportunity came up & I hope to get input from you to see if I'm on the right track.
I'm doing marketing for a specialty pharmacy that does "compliance packaging" for institutions & individuals. The individual side of the business is new & very few companies offer it. Instead of each medication in its own bottle, we sort a month's worth of meds, in labeled packets - one for each date & time you have pills to take. I had health issues a few years ago & struggled to keep my meds organized, pack them for work & travel etc. I wish this was available then -that's what first attracted me to the company. I feel it can make life easier and safer for many people. I'm not trying to sell/promote the company here, in fact, I made a point not to even mention the company name. I just want your opinion so please read on.

My idea is to create a fundraiser for 3-4 charities. PD was my first thought since it's crucial to take meds exactly as prescribed for PD patients. I remember my Dad, 30 min. before his next dose, balance & stiffness got really bad. I think the service (maybe w/ a timer) can be beneficial. We'd work with a nonprofit to tell people about the service & make a donation for each new customer, every month they're a customer, for on-going revenue for the charity. We'll do PR & let the world know about it & the nonprofit can inform their supporters in a way most appropriate for them. It doesn't require a lot of staff time/resources- we can do a lot just through social networking.

There are many cool features of the service & the fund raiser- it's not a big cost for a potential customer, it's the same ins co-pay as now, no charge for packaging, just a few bucks for shipping. So:
-do you like the fund raising idea, and the way it's structured?
-as Caregivers, do you think the service could be beneficial for PD patients? It needs to be a good fit for the fund raiser to be successful
-does it have potential but you'd do it differently?
-what PD organization should we raise funds for?
-or, am I way off base? if so, pls tell me why you feel that way. I'm making this up as I go along so I'm open to ideas for improvement.

I hope my post doesn't seem too commercial or offend anyone. I've wanted to raise money for PD for such a long time and I don't believe in coincidences. I'm pretty sure I'm meant to do this...on the other hand I really need this job & I don't want to fall flat on my face. I've done fund raising (Amer Heart Assoc, PBS)- but mainly spec. events, nothing like this. Any feedback is appreciated. Thanks!

By karolinakitty On 2010.03.04 20:13
This is just one of I'm sure many opinions.

From the research i have done with ALL of the PD foundations and groups, almost all of their monies go to research. This is great, but, what we need is a foundation that offers financial assistance to those in need. Of which I hope in the next year i will be able to get one going.

As far as the pills marked and ready to go, it looks good on paper, having the dates and times. But, as some of us are aware, we sometimes have to change times, cut pills and adjust meds so we can get the right dose in our PDrs. Most of the time this is done before we see the doc again and then let him know, mostly through the nurse over the phone, what is working best.

When you are on a level flow, meaning no big ups and downs, that is a good idea. It's during the rough times and adding, changing and adjusting the meds where i see it might be a problem. Also, with some PD patients being over 70, unless it was a very easy open pack it might be a problem getting it out and holding on to it. Even for someone who has really bad tremors or is just having a bad day, it may be hard to get the pill out and hold on to it long enough to get it taken. I know just with myself, i curse the stupid Benedryl company everytime i try to get a pill from it's pack, YIKES, i want to get a big butcher knife and cut it in a million pieces. Even then it probably wouldn't come out of the packaging.

IF, this company wants to do a fundraiser, to me, it would be best not to go to any of the current charities but start one of their own like pparx.org.

Something that would help those who have no, or limited insurance get their meds. Since my pdr has had no insurance for years, due to a horrific brain injury, we, until now, have had to pay for all our drugs, out of pocket. It has been a strain on us financially and i know we are not the only ones. $313/requip XL 12mg, $295/Aricept, and we are in the early stages. That's over $600/month just to keep the meds he needs. That doesn't include the fortunes for the doctors and tests. There are so many out there who could use assistance, those of us who have too many assets for medicaid, are in between disability decisions and those who still work but have no access to health insurance. Even with a 20% discount from together access, a prescription plan through pparx.org, it's still a lot of money each month. We are fortunate our house is paid for and we have no mortgage or else things could have been worse.
I don't think you are way off base, i think it's a good idea, with a few considerations.
I think the packaging needs to be "tremor" friendly and perhaps a "new" drug program to help those who can't afford the meds......

By LOHENGR1N On 2010.03.05 00:13
karolinakitty, if you click on the home link above and then click on resources scroll down a bit and there is a link to the Hollyrod foundation. They are dedicated to help Parkinson's Patients and will even help pay for med's or pay for med's if there is a financial need so patients can have medication they need but can't afford. Take care, best of luck and hang in there.

By karolinakitty On 2010.03.06 21:42
AL. Thanx i missed that... we just got his disability and his medicare card came yesterday, so monday i'll enroll him in Part D for scripts, I'll post elsewhere but i hope his meds are covered.

By lbellomy On 2010.03.07 23:18
Read all of the information that you get on Part D. Some of them have a pretty high premium and not much lower annual deductible. They are rated for their customer service. I chose one that has 4 stars and a smaller premium. 5 stars is the highest. This will make sense when you get the book.
Lorraine


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