Cystic Fibrosis Book Drive

Have you heard of Cystic Fibrosis?  Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.  Part of having the disease is living with hospitilizations, taking a cocktail of drugs to digest your food, taking insulin to treat cystic fibrosis related diabetes, and eating high a calorie diet because your body doesn't absorb nutrients well.  It's often called an "invisible disease" because most of the time, you wouldn't know that someone has the disease on the outside.

My husband has cystic fibrosis, and this past year, he spent over 6 weeks in the hospital.  He was hospitalized because he contracted the flu and could hardly move as a result.  He was hospitalized because he caught a common cold and couldn't recover without a 2 week stay and IV antibiotics. Living with CF means common illnesses aren't so common. A cold could result in a bad infection that robs you of lung function, the flu could cause irreversible damage to your already damaged lungs, and being with your family for birthdays and holidays is never a guarantee.

This year gave me a lot to reflect on and I thought a lot about other patients in the world with cystic fibrosis.  Recently I also joined Usborne Books & More because I love their educational books and use them with my children to supplement our homeschool curriculum.  One of the best things I have discovered about being with Usborne Books & More is the ability to give back by doing a book drive, or one of their other community programs.

Right now, I am running a Cystic Fibrosis Book Drive with Usborne Books & More to purchase books for the University of Iowa Cystic Fibrosis clinic where my husband was hospitalized as a child. Through their Literacy for a Lifetime program, they will match 50% of all donations.

Want to help? Donate! The goal is to raise enough money to donate over 125 books, or $750.

If we raise $750.00, Usborne Books & More will donate $375.00 in additional books.  Can you imagine over 125 new books for those little ones to enjoy?  It would be awesome if we could reach our goal and get an additional 40 or 50 books to donate from Usborne Books & More!

Please SHARE with friends and family! No donation is too small.  

During a hospitalization, patients sit throught hours of breathing treatments, IV medications, and lung function tests.  These books would be such a fun alternative to another tv show or just sitting alone.

(image credit: http://cnnphotos.blogs.cnn.com/2012/05/05/children-affected-by-cystic-fibrosis/?hpt=hp_c4)

The main focus of the book drive: activity books, like doodling pads, coloring and sticker books, and books that can be read again and again.  

Consider donating, just $6 is enough to provide 1 book for a child to enjoy.  

Thank you for taking the time to read about the book drive!

DONATE HERE

Great Strides Walk Honolulu 2011

Join the Great Strides Walk for Cystic Fibrosis this year in Honolulu.  May 28th from 8:30 until 12:30 in Kapiolani Park.  Last year, everyone checked in and then we all walked around the park and there were photos set up with stories about CF patients.  It is a great way to show your support! 

To register, go to cff.org, search for Hawaii, and click register.

This years walk is about 2 miles around the park and could really use your support!  Can't come out and walk?  You can also donate at cff.org.  Great Strides is the Cystic Fibrosis Foundations largest fundraiser, and anything you can donate is used to help find  a cure.

To read more about Great Strides and Cystic Fibrosis, click here.

Cupcake Bake off for IHS

This morning I held the annual bake off between a few friends and I for donation.  Last year we donated cookies to IHS, Institute for Human Services.    This year we made cupcakes and had a blast decorating them and making up new designs.  IHS accepts all different types of donations and you can read about what they need here.  They take food, laundry detergent, deodorant, razors, notebooks, pens, pencils, fruit for the keiki, G rated DVDs, and arts and crafts supplies to name a few.  They need pretty much everything, so think about what you can give, and check out their site to read more about who they serve.

A few of our many creations.  We made carrot cake cupcakes, chocolate, yellow sponge, funfetti, and lime yogurt cupcakes.  They were YUMMY!

Hard at work, look at all those cupcakes!

The girls showing off their goods.

Mauli Ola Foundation

As many of you know my boyfriend has cystic fibrosis and sometimes I talk about it on my blog.  Ways you can help, volunteer, donate, etc.  Last year when I participated in the cystic fibrosis walk in Waikiki, I noticed a few people wearing surf CF shirts and was curious.  Today I remembered somehow about these shirts and thus discovered Mauli Ola.  What is Mauli Ola?  Mauli Ola Foundation works to introduce surfing as a natural treatment for  people with genetic diseases, such as CF.

How can surfing help cystic fibrosis?  You can read all about it here, but basically, the salt water helps to clean out their system and help them breathe better.  Being in the water is also spiritually reviving, (but there are actual medical benefits as well.)

This video talks about their "Surf Experience" days, where surfers take people out in the water that have cystic fibrosis and get them surfing.  Watch it, it is a really great video that gives you a better idea of what Mauli Ola is all about, and who is involved.

To donate, click here.

This foundation is amazing and gives such a great chance to so many people that have cystic fibrosis to get in the water and ride their very own "wave of the day." What is not to love about it?  Thank you Mauli Ola and keep up the good work.  :)  Please consider donating to help their cause!

Brides Against Breast Cancer

Brides Against Breast Cancer is an organization that raises money for terminal breast cancer patients wishes.  All you have to do is donate your dress, the organization holds large dress sales all over the country.  Then, they use the money from the sale to make someone's wish come true.

http://www.bridesagainstbreastcancer.org/

"Our Foundation resurrects these dresses, giving them new life as a bride's "dream gown" while the proceeds from the sale of these treasured possessions help grant wishes and memory making events for women and men who are losing their battle with breast cancer."
(taken from the website...   http://bridesagainstbreastcancer.org/)
 
 
Want to make your wedding about charitable giving and caring for others?  Check out this link to donate in honor of your guests or to pass out donation cards at your wedding reception.  http://pinkenvelopeproject.org/pep_wedding_reception.html
 

 
Not a bride?  That's ok!  The Pink Evelope Project has lots of great ways you can help make wishes come true.  You can volunteer, donate directly to the foundation, spread awareness, or invite friends to join.  Go to:: http://pinkenvelopeproject.org/ for more information.
 
"Our mission is to grant wishes, including memory-making events, for metastatic breast cancer patients, while continuing to support, educate and increase resource awareness." (taken from the website above)
 
Why not donate your dress?  You probably can't afford to give $500 to a charity right after your wedding, but you can donate that $500 dress you just wore.  When are you going to wear it again?  Most likely never.  Give it a new life, full of love and wishes.  If you live in Hawaii, you are in luck. 
 
http://www.donttrashthedress.com/ is offering a free photo shoot in exchange for your dress.  All you have to do is set up a shoot after the wedding.  You will get great photos, amazing shots of you in your dress, and memories that will last a lifetime.   (Photographers site...http://www.idobelieve.net/ ) Go to these sites and check it out for yourself. 
 
Decide for yourself where you see your wedding dress in 5, 10, 15 years...  Making dreams come true, or dreaming of being worn again in your closet??

What is Cystic Fibrosis?

Do you want to make a difference in someone's life?  Do you want to help make someone's quality of life better?  Keep reading, Cystic Fibrosis is a genetic disease that affects around 1,000 more people each year. 

Do you know what cystic fibrosis is?  "Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult.  Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines.

People with CF can have a variety of symptoms, including:

very salty-tasting skin; persistent coughing, at times with phlegm; frequent lung infections; wheezing or shortness of breath; poor growth/weight gain in spite of a good appetite; and frequent greasy, bulky stools or difficulty in bowel movements.

Statistics about cystic fibrosis:
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 45% of the CF patient population is age 18 or older.
The predicted median age of survival for a person with CF is more than 37 years.

How can people help to advance science/research/support?

Cystic fibrosis research is a team effort. Scientists across the world are working to understand and beat this complex disease, with the hope that one or more of the many approaches to therapies will lead to a cure.

You can help advance CF research in several ways:
Make a Donation – Money buys science and science buys life.
Join a CF clinical trial.
Contact your local CF Foundation chapter and volunteer. Learn about the many special events that raise the money to keep the science moving ahead!
Become an Advocate and raise awareness – help educate your elected officials about CF"

All of this information was taken from the Cystic Fibration Foundation website at http://www.cff.org/. 

To make a donation go to http://www.cff.org/GetInvolved/ManyWaysToGive/MakeADonation/

Did you know that this disease affects the entire body?  The lungs are the most noticeably affected, but look at this chart to see all the other areas that are affected::

2nd Annual Christmas Bake OFF!

 These are the product of the annual Christmas bake off.  We have ginger spice cookies, shortbread with orange marmalade, coconut oatmeal cookies, and oatmeal cookies with raisins and dried cherries.  YUM!  This year we donated the cookies to IHS or the Institute for Human Services.  You can see how you can help at http://www.ihshawaii.org/. 

-A little about IHS, donations and how you can help:-

"-IHS provides respite for those who are unsheltered and solutions that transform the lives of homeless and at-risk people."

"-IHS depends upon the generosity of the community to meet fully one third of our modest budget
-85% of our revenue goes to programs (our guests). The money that we raise is to help people; it does not go towards excessive fundraising or to pay for pretty business offices. IHS is doing good things with your money. Your gifts are not taken for granted. Each gift is appreciated and provides meaningful assistance!
To view our latest IRS Form 990 please visit www.guidestar.org
---Here’s what your contribution will do:
$35 Provide a nutritious lunch & dinner for a homeless child for a week.
$40 Provide hot showers for a guest for a week.
$50 Provide a week’s worth of childcare supplies.
$100 Provide 2 week’s worth of social services for a homeless adult.
$200 Sponsor a homeless family for a week (2 adults & 3 children).
$250 Host an evening meal for the Women & Families’ Shelter.
$500 Underwrite a portion of the utilities for both shelters for a week.
$750 Case Management services for Supportive Housing."
-----(information taken from their website)

-They also need volunteers, you can read more information at : http://www.ihshawaii.org/IHS_Volunteer.html