Five for 5 - Oct 7

Here is the next installment of 5 for Five with Jenn at Party of One.

So what is 5 For Five?  In the short form, it is 5 goals you want to achieve this week.  Next week, I will report on my success (or failure).  Jenn does a better job of explaining it here.

Here were last week's goals:
1. Read more newspapers. Fail.  I read one.
2. Redesign the blog. Success!
3. Figure out which dress clothes fit to return to work next week. Sort of.  I found a few that fit, but since the government shut down mid week, I'm out of work until it re-opens.
4. Stay up all day, what would be a work schedule. I did pretty good.  Still slept most mornings until 8 or so.  I need to be up around 5:30am for work, but since I don't know when I'm going back to work....
5. Make sure Daddy is all set to care for Ms. Shelby. Daddy cared for Ms. Shelby all day for most of the week.  I think they are all set.


Ok, so what are my goals for this week?

1. Get some of those newspapers read!  I want a bunch done before I go back to work (whenever that is!)
2. Pre-write some Niemann Pick blog posts.
3. Get the paperwork organized again!
4. Find ways to save money.
5. Get my closet organized.


Anyone want to join me in making some goals?  How did everyone do with their goals from last week?
So what are you planning for this week?  Feel free to post them below if you want.

Drug Development and Regulatory Approval

Andrew Mulberg, M.D., representing the FDA, discusses the process to get approval for a rare disease clinical trial. This is especially of interest to the families of the NNPDF as we currently have TWO clinical trials taking place for Niemann-Pick Disease. 
     1. Acid Sphingomyelinase Deficiancy (ASMD) ~ Enzyme Replacement Therapy
          Sponsor:  Genzyme, a Sanofi company, Mount Sinai School of Medicine
          To learn more about this trial ~ follow this link.  
      2.  NIH/TRND Hydroxypropyl-β-cyclodextrin (HP-β-CD) for NPC
           Sponsor:  National Institutes of Health
           To learn more about this trial ~ follow this link.
Dr. Andrew Mulberg's August 2013 presentation and professional information is noted below:
View Dr. Mulberg's Video Presentation
View Presentation Powerpoint
View Dr. Mulberg's Biography

Dr. John McKew's presentation on Therapeutics for Rare and Neglected Diseases (TRND).  Dr. McKew was one part of a series of mini-presentations referring to elements of the FDA presentation highlighted above.

Dr. John Mckew's August 2013 presentation and professional information is noted below:

View Dr. McKew's Video Presentation
View Presentation Powerpoint
View Dr. McKew's Biography

Dr. Forbes "Denny" Porter's presentation on The Cyclodextrin Phase 1 Trial.  Dr. Porter was one part of a series of mini-presentations referring to elements of the FDA presentation highlighted above.

Dr. Porter's August 2013 presentation and professional information is noted below:

View Dr. Porter's Video Presentation
View Dr. Porter's Biography

For more information on the research and these presentations see the NNPDF website at www.NNPDF.org

The face of Niemann Pick Type A

I want to introduce you to little Amber.  Amber lives in New Zealand and has Niemann Pick Type A.

We had the pleasure of meeting Amber and her mom Laura and dad Dylan in Nashville at last year's Niemann Pick Conference.

Amber has had some serious set backs the past few days and the disease may be taking its toll. Her kidneys and liver are not doing their job anymore.

Amber can use some healing thoughts and mom and dad could use some prayers for guidance.  

I just added her blog to the Other Families tab.

Create Jewelry in Memory of Dan

October is Niemann Pick Disease Awareness Month

This is my second fundraiser for this month.

NATIONAL NIEMANN PICK DISEASE AWARENESS FUNDRAISER

DAN’S DREAMS

SATURDAY, NOVEMBER 2, 2013

11AM TO 1PM

BALLSTON SPA ELKS LODGE

10 HAMILTON ST

BALLSTON SPA, NY 12020

Come create necklaces or bracelets in 5 easy steps.

Join us for giveaways and raffles.

Can't make it? Don't worry.

Place an order online at http://jessicawells.origamiowl.com and be sure to

select "Jill Flinton's Niemann-Pick Fundraiser Jewelry Bar" at the checkout.

or see Jill Flinton for an order form

20% of proceeds go to Niemann-Pick Disease Foundation (www.nnpdf.org)

Online orders can only be shipped to USA

Show your support for Niemann Pick Disease

October is Niemann Pick Disease Awareness Month.

Today we are excited to roll out the "NEW" PersevereWEAR online store! These clothing items were first made available and sold at the 2013 Family Conference in Baltimore, MD,and now they are easily accessible via this link: PersevereWEAR Store

Not only can you purchase sweatshirts, t-shirts, visors, and hats, you can also create your own shirt for your Niemann Pick fundraising event.

Donate in memory of Dan

October is Niemann Pick Disease Awareness month.

This year, I am doing 2 fundraisers.  This is the first one.  During the month of October, I am hoping to raise $500.  Any funds raised will go to the NNPDF to help fund future research.  Donations are only accepted online at the link below.  Any amount is great!

Donate in memory of Dan

Niemann Pick Disease Awareness Month

 

It's that time of year again.  

During this month I will be highlighting different people and ways to make a difference.

www.nnpdf.org