Webinars on Rare Diseases

I know this isn't for everyone, but through my blog I also hope to educate others rare diseases.  This information came in my email this morning.  Even if you don't (or can't) attend, please forward the information to someone who may be interested.  This will be recorded and archived for podcast if you can't attend.

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 Here is the link for the podcast

RARE Webinar Series: Newborn Screening

Global Genes | RARE Project will be hosting a series of webinars in 2013 geared towards educating and empowering our RARE community.

Webinar #1:  Newborn Screening
Register today!

 

Many more diseases can be detected at birth than are currently part of the newborn screening panels in each state. Join us for a vibrant discussion and to learn more about why the states have different screening panels, how a particular screen can become part of your state’s NBS panel, how the federal SACHDNC panel influences state screening, and the importance of renewing the Newborn Screening Saves Lives Act of 2007.

Date:  January 24, 2013
Time:  11:00 am Pacific Time

Panelists:
Panelists have expertise in both state and federal newborn screen laws, will discuss the process and challenges connected to expanding newborn screening and review the re-authorization of the Newborn Screen Act coming before Congress in March.
* Bill Morris, Grey’s Gift
* Jim Bialick, Newborn Coalition
* Dr. Fred Lorey, Chief Genetic Disease Screening Program (California Department of Public Health)

Sponsored by:  Shire
Space is limited.  Click to register.
(once you click,  you will be directed to our main webinar page.  Click “register” in the middle of the page to register for this webinar)

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Screening for rare diseases at birth is very important.  Not only do the parents obtain a diagnosis right away, it helps parents connect with others and put a support structure into place right away.

Every state tests for different diseases - and some states test for more than others.  Click here for a website where you can link to each individual state's newborn screening program.  Here is a quick view file which shows the same information.

Based upon the above information, there are only two states that test for Niemann-Pick diseases in the newborn screening process: Illinois (types A & B beginning in 2014) and Missouri (although listed as testing for NPD in the file above, it is not listed on the list of diseases tested for).

Thought for the day

I may not have gone where I intended to go,

but I think I have ended up where I intended to be."

--Douglas Adams,
English writer

I saw this quote a week or so ago and thought about it, a lot.

How many of us have specific plans and ideas about what we want to do in any given day, week, month?  How many of those specific plans and ideas do we do?  How often did we get sidetracked or off on a tangent?

Do you remember what you wanted to be when you grew up?  A ballerina, an astronaut, a firefighter?  Did you achieve that goal?

All of our day to day experiences - who we meet, what we do - have the ability to change the way we move through life.

Looking back, I didn't know if I was ever going to get married or have kids.  And now, I've been married over 10 years and had and lost a child. 

Did I ever expect to be a blogger?  Nope.  (ok - this "job title" didn't even exist then)

Did I ever expect to be a teacher about Niemann-Pick Disease?  Did I ever expect to be someone who others ask for advice?  Nope. 

But my experiences have changed where I intended to go, and instead put me where I am today, which is exactly where I need to be.

So that is today's thought for the day.

Financial Goals for the New Year

Last week, I read an interesting post on financial well-being for all ages.  I have copied that post below.

The original post was on the AICPA Insights Blog on January 2, 2013.  I hope my readers find some useful information that can help them get their financial affairs in order.

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Spreading Financial Well-Being

Posted by Melora Heavey on Jan 02, 2013 in Financial Literacy, Melora Heavey

In my professional travels I meet individuals from all over who know about the AICPA’s financial literacy programs and use our resources in many creative ways.  While some are CPAs, the majority is not, and yet each is equally committed to improving the financial well-being of their loved ones, friends and communities.  If I had a dollar for every time someone sang “Feeeeed the PIG!” to me after seeing our campaign promotional items on a conference display table, I just might have enough money to pay off my student loans.  (I never get tired of this serenade!)

Here are some of the many ways these free resources are being used:

Me Save?: A community college teacher in Maryland uses this interactive feature on the Feed the Pig website in freshman orientation classes to help her students identify what type of spenders they are and assist with the delivery of their financial literacy program.  By taking these steps and following the corresponding tips, they are on the right path to change their spending habits and increase savings.

Tweens Curriculum:  This free, math-based curriculum for 4-6 graders includes a teacher’s guide full of classroom activities, an online game and a take home activity for students to share with their families to reinforce the savings message at home.  Here are just two real-world examples of how this is used outside the typical school classroom:

• A high school teacher in a small New England school encourages groups of 2-3 students to select an activity and present to students in a lower grade.  She says that having the “big kids” teach the younger students impresses the 4-6 graders more than if their teacher taught the same lesson.
• A local non-profit copies the one-page take home activity and includes it in goodie bags for parents who attend their Healthy Families programs.

Fuzzy Pigs and other Promotional Items: We give these small fuzzy pigs (aka weepuls) out at the annual the National JumpStart Teachers Conference and the California JumpStart Teachers Conference.   Teachers love to use these during their financial education lessons as prizes for the students.

Weekly Savings Tip:  Although the Feed the Pig campaign targets 25-34 year olds, many of the campaign’s messages are relevant for all ages.  The Weekly Savings Tip, which is sent out via email every Monday, provides easy to follow guidance for managing money.  Many subscribers forward this to their children and friends.  One woman, who I would guess to be over 70, told me she faithfully forwards each tip to the members of her women’s group.  She reports that they all find it to be very useful information.

360 Retirement Calculator: A little closer to home, I have a friend who uses this calculator on a monthly basis to ensure he’s on track with his retirement savings, as well as before he makes any major changes in his retirement planning.  He’s set to retire at 55!

How do you use the free financial education tools offered by the AICPA and your state CPA society?

Melora C. Heavey, Senior Manager - Communications, American Institute of CPAs. Melora manages the CPA profession’s volunteer effort, 360 Degrees of Financial Literacy, and the award-winning public service campaign, Feed the Pig.  She serves as the staff liaison to the National CPA Financial Literacy Commission, the leadership body and primary spokespeople for 360 Degrees of Financial Literacy.

- See more at: http://blog.aicpa.org/2013/01/spreading-financial-well-being.html#sthash.WDNuTn2W.dpuf

5 for 5 - 2013 Week 1

It's Monday! That means a new installment of 5 for Five with Jenn and Jessica!  See the blogs participating by clicking on the button on the left or below.

Last week's goals:

1. Read 10 newspapers.

     Done!  Read 16 (another 2 weeks worth!!)

2. Get coupons organized.

     Nope.  I added to the pile without organizing them...

3. Rest a bit more.

     Done!  Had 2 days off last week which really helped me kick this flu.

4. Write 3 more posts this week. 

     Done!  See them here, here and here

5.  Clean out my closet.

     I put the clothes that were on the floor into a bag.  So I will give myself a quarter.

 3 1/4 isn't too bad..... here's hoping next week is better.

This week's goals:

1. Read 10 newspapers. I will get caught up!

2. Get coupons organized.  There were lots of coupons in  yesterday's paper, so I really have to do it.

3. Continue cleaning out my closet.

4. Make my reservations for Milwaukee in early February.

5. Write 3 more posts this week.

It's Winter!

As I was looking through the blogs that I follow, I realized that many of them are in warmer climates.  I know some of my followers are local to me, but I also know others are far away.

So here are some pictures from the world outside my door these past 2 weeks:

Yes, lots of snow.  This snow was from 2 storms: the Thursday after Christmas when we got about 12 inches and then that Saturday between Christmas and New Year's when we got another 6 inches.  Most of it is still here too because after the snow came it turned bitter cold and spent about 36 hours hovering at or below 0 degrees F.

The bottom picture shows and area where my hubby snow blowed much of it away so could have a place to park our cars and the dog could have a place to go out (which she really doesn't want to do).

New Year, New Word

Late last year, I saw a series of words from friends on Facebook and a link. 

After the difficult year I had last year, I wanted to focus on something.  So I thought about it and made these two posts on my Facebook page on January 1:

My goal for 2012?  To be a teacher and an advocate in my own way for all those kids and parents with special needs that need help.  Special needs are not illnesses and are not contagious, so we need to teach others too.  Will you join me in any way you can?  (commitment not needed now, but consider it).

My word?  Helpful.

I think I was helpful.  I started this blog. I continued my Facebook group for those with special needs. I held a fundraiser.  I supported others. I wrote a couple of magazine articles.  Only my friends and family can tell me if I really was helpful.

One of the other mothers who has lost her son to Niemann-Pick, Type A, posted her word on her blog the other day.  And I do understand where she and her family are coming from. 


So what is my word for 2013?  

BELIEVE

Dan's Life in Pictures: 7-12 months

Every so often I see a great deal on these Shutterfly books.  Since all we have is memories and pictures of Dan, I take my time and put the books together and have them printed.  Here is one of the latest ones I put together.  (Disclosure: I have not received any sort of compensation from Shutterfly... I just love their books.)

Click here to view this photo book larger

Photo books are the perfect gift for any occasion.