May is National Cystic Fibrosis Month


Did you know that May is National Cystic Fibrosis month? Cystic Fibrosis has devastating effects on those inflicted with the illness. If you don't know of anyone personally with CF, you can read about its effects in Dear Nobody: The True Diary of Mary Rose, but I warn you. It's heartbreaking.


 





Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Symptoms of Cystic Fibrosis:
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;
  • frequent greasy, bulky stools or difficulty in bowel movements.
Statistics:
  • 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 in the early 40s.
Tips for Optimal Health:
·         Avoid the spread of germs
·         Watch your diet – high calorie and high fat diet for those with CF is essential
·         Take pancreatic enzyme supplements in addition to vitamin supplements
·         Keep sugar in check
·         Take care of your lung health by performing lung exercises

Resources for Patients with Cystic Fibrosis
  • CF Patient Assistance Foundation (CFPAF) - The CFPAF helps people with CF afford the medications and devices they need to manage their disease.
  • Social Security Project (SSP) - A CFPAF-sponsored program that helps people with cystic fibrosis apply for Supplemental Security Income (SSI) and Social Security Disability Income (SSDI) benefits.
  • CFF Case Management & Technical Assistance - A team of case managers that support CF care centers and people with CF to understand and navigate insurance, reimbursement and coverage issues. 
  • Patient Assistance Resource Library - An online database that provides documents, template letters and other tools for people with CF, caregivers and insurers.
  • CF Legal Information Hotline - A resource sponsored by the CF Foundation that provides free information about the laws that protect the rights of individuals with CF.
  • CFF Mutation Analysis Program (MAP) - A free and confidential genetic testing program for people with a confirmed diagnosis of cystic fibrosis to help make informed decisions about treatment options.
  • Spanish-Language Materials - Information about the Patient Assistance Resource Center, and the services provided, have been translated into Spanish and are available as handouts.

The above information has been taken from the Cystic Fibrosis Foundation website.  For more information, visit them at http://www.cff.org/.


Rose and the Lost Princess blog tour







Holly Webb is the literary genius behind the series. She has worked as an editor before becoming an author of many books for children. You can find out more about Holly Webb on her website, Facebook page, or Goodreads.




I am so pleased to be participating in the blog tour for Rose and the Lost Princess. I have no idea how this series has escaped me for long, but once I discovered it I fell in love instantly.

The series has everything a middle grades fantasy/mystery should have: a spunky main character, delightful sidekicks, dastardly villains, and happy endings.











The second spellbinding adventure with Rose… Turning the worn pages of her spell book, Rose can’t believe how much her life has changed. Once a poor orphan, and now an apprentice to the King’s chief magician! But when the country’s beloved Princess vanishes, everything changes. As rumours of dark magic fly through the city, the King asks Rose for help. She must find the missing Princess – before all is lost.












My thoughts:


Rose makes my heart smile. So far, Rose and the Lost Princess is my favorite in the series. The unique and imaginative plot won me over. The second book in the series begins right where Rose ended. For me, that helped keep the plot interesting and moving quickly because it felt like the story never ended.

This time around there is a new villain on the block, and what a villain he was! The interesting plot twist offered by the villain kept the story feeling fresh.

Of course, what would these books be without the cat? I really do think he's my favorite character. I just can't help but love his sarcasm. It's obvious that he loves Rose, but he tries to hide it so well. His role in the novels also helps move the story along and prevents it from stalling along the way.

Ms. Webb's writing is also exceptional. Her vivid descriptions whisk you away to the time and place in which Rose lives. I feel like I'm living in the same house as Rose and experiencing her life through her eyes. The interactions with the other characters is believable for the time period and her position in life. But the story doesn't feel forced or bordering on what might be considered historical fiction. It is definitely fantasy, and a delightful romp through the genre. There is plenty of magic (and magical mishaps) to excite the reader, and I do believe there might be a young romance starting to bloom for our heroine too.   

I highly recommend this series for middle grade readers. While it will probably appeal to girls between the ages of 8-12 the most, there is still plenty to appeal to older readers. Rose is clever,  resourceful, and a believable character. Many readers will find pieces of themselves between these pages.





Giveaway Information:

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Check out the other stops on the ROSE blog tour: 








Date Blog
Tu April 1 A Backwards Story
Wed April 2 Geo Librarian
Th April 3 The Fairview Review
Fri April 4 YA Books - What We're Reading Now
Sat April 5 The Book Monsters
Sun April 6 Hopeless Bibliophile
   
Mon April 7 Cover 2 Cover Blog
Tues April 8 Sharon the Librarian
Wed April 9 Batch of Books
Th April 10 Word Spelunking
Fri April 11 Kelly Vision
Sat April 12 Central MN Mom
Sun April 13 Coffe & Books & Art
   
Mon April 14 The Hiding Spot
Tues April 15 Debz Bookshelf
Wed April 16 Miss Tiff Reads
Th April 17 Snarky Mamma
Fri April 18 Emerald City Book Review
Sat April 19 The Styling Librarian
Sun April 20 Hook of a Book
   
Mon April 21 Book Referees
Tues April 22 Inspired by Fiction
Wed April 23 Blog of a Bookaholic
Th April 24 Wondrous Reads
Fri April 25 Tanya's Book Nook
Sat April 26 So I'm Fifty
Sun April 27 In Bed With Books
   
Mon April 28 Jump Into Books
Tues April 29 One Momma Saving Money
Wed April 30 Literary Rambles
Th May 1 Hope to Read
Fri May 2 Tales of Mommyhood
Saturday May 3 To Read or Not To Read
Sunday May 4 The Book Club - Rubina Ramesh
   
Mon May 5 Wands and Worlds
Tues May 6 One Crazy Kid
Wed May 7 Inspired Librarian
Thurs May 8 The Flashlight Reader
Fri May 9 A Madison Mom
Sat May 10 Got Fiction?
Sun May 11 Jean Book Nerd
   
Mon May 12 Books Beside My Bed
Tues May 13 Novel Nutritious
Wed May 14 Tea and Savories
Thurs May 15 The Bookaholic Blurbs
Fri May 16 Live to Read
Sat May 17 Read Your Bookcase
Sun May 18 Redd's Reads




































































































































































































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