Making an Impact

Hey everyone,

Wow, thanks for the huge response. So far, I have almost 50 signatures (46 to be exact)...I didn't even know that many people read this blog! I recently got a response from a reader in Nigeria that shows that we did make an impact!

I guess your open letter to Xechem/Nicosan is being taken seriously and it is having effect within the organization. I say this because i came across an ad on Google concerning Nicosan. The COY [Xechem's management firm] has just began to create awareness about their product on the internet for the first time. Great. Thanks to you, I guess.

*Doing a happy dance*

Go Team Nicosan!!!

Open Letter to Xechem/Nicosan

Hey everyone, Due to the constant requests for changes with distribution of Nicosan, I'm putting up a letter that I plan to send to the Xechem board. If you would like to support the contents in this letter, please either email me your name or sign below. The more people we have, the bigger the impact. I might modify the letter to fit the power of WE and whatever suggestions anyone has. Thanks.

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Dear Nicosan Administrators/Creators:

My name is [redacted] and I’m the author behind the sickle cell blog found at http://sicklecellblog.blogspot.com. The reason I’m writing you is to thank you for creating such a wonderful remedy for sickle cell crises and to let you know how wonderfully this drug has improved my life.

I’ve lived with the pain of sickle cell all my life---the pain has been a part of my every waking existence and I’m sure that many other sickle cell sufferers can relate to this. I’ve tried various medications and herbal remedies in the past; herbal teas, almond seed tea (yuck!), fagara root, Hydroxyurea, Pro-Arginine to control this condition but have always met with very limited results and/or awful side effects!

I reside in the United States and one of my readers recommended Nicosan to me in May. I’ve been taking it since then and the results have been extraordinary. I can’t even remember the last time that I had pain, and my painkillers sit in my cupboard collecting dust. I have more energy and can live life to the fullest without worrying about another crises creeping up on me. My life has totally changed, and it’s all because of Nicosan. I feel like I have a fresh new lease on life, and I can do anything and not have to worry about falling sick ever or collapsing from the pain. I’m constantly amazed that there are no side effects at all, and that my blood counts remain steady.

Presently I’ve told everyone I know with sickle cell about Nicosan and everyone that knows a sickler or is a sickler wants to know how they can get it. Unfortunately, it’s not easily obtainable in the US, and I’ve had to go through some tricky, complicated channels just to get my own monthly dose. I know that shipping medication across international waters isn’t ‘legal’, but this is one case that I will go to any measures to make sure that I stay on this path of being healthy.

I’m not sure what the holdup is, but there are hundreds and thousands of people that are waiting and desperately need this remedy. We thank you for your help, and I’m begging you to please do whatever you can to get this medication legalized and approved in the United States. This will help to bring down the cost for us (right now it’s at $55-$75/bottle) as well as enable us to be able to use our insurances to pay for it.

I’m doing my best to spread the word about Nicosan to everyone but the main resistance that I’m meeting is that it’s not FDA approved yet. Sickle cell patients are skeptical, and have been sold all kinds of ‘cures and remedies’ since we are so desperate for a solution. And yet here is one that absolutely works but doesn’t have FDA approval.

Also…why hasn’t there been active MARKETING? So many people need this solution, and yet few have even heard about Nicosan and how it can change your life. I’m getting emails from Brazil, London, Egypt and even Nigerians and other Africans, all wanting to know about how they too can get Nicosan. There is a huge untapped market out there just waiting and praying for a solution to conquer this life of pain.

Please know that whatever your efforts and sacrifices have been, they haven’t been in vain. Also know that there are so many people that need you all to push forward and go through all the necessary channels to make Nicosan the #1 treatment of choice for sickle cell patients all over the world.

Kindly let me know if I can ever be of assistance.

I have faith that with perseverance, the right direction and vision, you all will be able to make this possible.

So here is a HUGE thank you from the bottom of my heart to all the people that made it happen; the scientists, test subjects, engineers, stockholders and visionaries…thank you all! Thank you so much for all that you have already done, and for all that you are going to do. I’m expecting great things from Xechem & Nicosan.

With everlasting gratitude,

Nicosan Changes

Wow, you all are totally something else!

I've gotten quite a few orders ever since this started...I didn't know that so many people were interested---I would have done this a long time ago!

Unfortunately, since the 1st trial run, I've had to increase the prices slightly due to the unexpected costs on my end (Western Union/Paypal fees...those money grubbers!) If it wasn't for the high volumes I'm getting, I would be able to cover the extra charges from my own pocket---but unfortunately that is not the case. So I've had to add a slight increase to the rates.

Hopefully with the more orders we get, the lower the prices will become.
The first shipment has gone out...and I'll be sending the money on Saturday for the 2nd shipment; so if you want to get in on it there is still time.

Hope you all are doing well.

Nicosan Order Sent

Hello darlings,

For starters, for everyone that ordered before Sunday, I've sent the money, the supplier has received it, and has sent out the shipment as of today. So you should be getting your order in a couple of weeks. Please let me know once you have it.

Also let me know how easy/difficult the ordering system was for you, so that we can make changes accordingly to streamline the process.

Presently, I'm overwhelmed with a bunch of things going on in my personal life/school and work, so if you send me a message, and don't hear from me right away, please don't be alarmed---I will get back to you as soon as I can.

How are you doing?

Changes Regarding Skittles

Wow, you guys are truly the best! I've gotten so many emails in the 24 hours since it's been up...and so much overwhelming support. Thanks to those that have already placed an order; that totally surprised me. So whoever wants to jump on the bandwagon before Saturday, you can still join in.

I'm going to change the wording on the site just a tad, because of a warning that I got from one of my readers.

We all noticed that you’ve taken a step to help bring Nicosan in the US for others, but we want to you be careful, since it’s a non-registered drug with the FDA, it’s entirely possible that you could get yourself into trouble. As much as we all want to see you (or anyone) selling thousands of bottles, we don’t want you get into hot water for doing it. I think if you gathered individuals together to make a bulk purchase (like you essentially are), you might be fine, but the minute you put a PayPal link for a purchase on your website you’re getting into a gray area that probably will get you a phone call or letter from the FDA. They may never find you, but you’re better off being safe than sorry.

My father-in-law had a huge run-in with the FDA a few decades ago, and the horror stories do give me shivers! So I'm going to avoid that as much as possible. I will be changing the labels from Buy Nicosan to Donate Nicosan, it's essentially the same thing for you guys, but will just mean some maneuverability for me. In addition, I might just take the paypal thing off altogether and create a system using emails that give you the same output...it's just not going to be as convenient.

I don't want to put this blog at any risk, because I adore what I do...and Nicosan will always be secondary to my passion for telling people about living a wonderful life as a Sickle Cell Warrior. So if changes must be made in the format of the Nicosan orders; then I have to do that.

If you have any suggestions to get around this problem, that would be great. Please email me!

Great News: I'm a Nicosan Distributor

Hello everyone!

I keep getting inundated with emails from readers that want to buy Nicosan. So ever your loyal servant;) I've been working on getting it available for us all. The good folks that ship Nicosan from Nigeria have offered a reasonable discount for my readers. So we get Nicosan at $35 per bottle...yay! I don't know how long this is going to be for, (the price might go up depending on shipping rates, etc!)

The only drawback is that I must have 6-12 orders (bottles) to get a decent shipping rate. So here is where the fun part begins. I will be taking and combining orders every week. Every Saturday, I will send the information/money to the supplier in Nigeria. He will process and ship you your order in 2-3 weeks.

Each bottle will cost $35. Shipping on each bottle is $15, so that will take you up to $50 per bottle.

If you get 6-12 bottles however, it will be shipped per order. Here's the breakup from the supplier:

Any orders for adult Nicosan from 1-6 packs would attract a shipping rate per bottle of $15 per bottle.

Any orders for adult Nicosan from 6 to 12 packs would attract a flat rate shipping cost of $50 (not per pack}

Any orders for adult Nicosan from 13 to 20 packs would attract a flat rate shipping cost of $75 (not per pack}.

Any orders for adult Nicosan from 20 to 24 packs would attract a flat rate shipping cost of $100 (not per pack}

So pretty much, the more you get, the more you save! I feel if we order together, we have more bargaining power on the rate and the shipping, so let's get on this.

The first batch of requests is going to be a trial run, as we work out the kinks in the process. This is my first time doing anything like this...and please note: IT'S NOT FOR PROFIT! I'm experiencing such a wonderful life change because of this drug so the least I can do to pass it on.

I want you to email me directly with questions or problems. My email is located on the sidebar. You can use your bank account, credit cards and debit cards, as long as you have a Paypal account. Paypal is free and easy to use, so create an account if you don't have one.

• Temporarily, I've set up Paypal to do this located right under my email.
• You can also send me a check directly, but that will take longer to process. Email me for my address if that is that case.
• If you wish to pay and have it shipped to someone else, please email me directly or change the address in the appropriate section.

We'll see how it goes.

Go to the spiffy BUY button on the sidebar to get started. Smooches!

WOOHOO!

Happy Birthday to me!

Okay, so here's a big *womp,womp* to all the doctors that said I wouldn't live past my 10th birthday.

I'm 28! Nanananabooboo!

Potential Cure for Children with Sickle Cell Disease Evaluated in Nationwide Research Study

There is a study underway on bone marrow transplants in children that you or your child/niece/nephew/grandchild...etc. might be eligible for.

The NMDP and other organizations are working together on a clinical trial for children (ages 3-16) with SCD. A study like this has never been done before and it aims to determine the effectiveness of unrelated marrow and cord blood transplants in children.

The trial is facilitated by the Blood and Marrow Transplant Clinical Trials Network (BMT CTN) and is funded by multiple organizations, including the National Heart, Lung, and Blood Institute; National Cancer Institute; National Marrow Donor Program; Sickle Cell Disease Clinical Research Network (SCD CRN) and the National Center on Minority Health and Health Disparities. Potential transplant candidates and their families can visit http://www.marrow.org/ for more information. Referring physicians can visit http://www.bmtctn.net/.

Currently, marrow or blood stem cell transplantation is the only potential cure for severe SCD. Most people with SCD who have undergone a transplant have received stem cells from family members, usually siblings. In this nationwide, multicenter clinical trial, researchers will evaluate the role of unrelated donor transplants in treating severe SCD and the effectiveness of a less-intensive regimen of chemotherapy to prepare patients for transplant.

The study is looking for 45 children with SCD from around the country. There are 20 different trial sites in the US participating.

Please click HERE for more info, and have your doctor contact the study if you are interested in joining. The more participants, the better chance we have for a cure.

Contact Antoine LaFromboise for more info.
612-455-1724
alafromboise@psbpr.com