Register for CF Webcast!!!

Produced by the Cystic Fibrosis Foundation, this innovative series of Web casts brings the cystic fibrosis community together in a “Virtual CF Education Day” forum to learn from the experts about living with CF and the latest in CF research."Take the guesswork out of working with your CF care center!"

When: Thurs., Aug. 19 (8:00 p.m. ET) for a live Web cast, "Partnering for Care: Help Your CF Care Center Help You Thrive"

Watch this free Web cast for tips on working with your CF care providers to maximize your or your child's CF care.

The Web cast will feature CF experts:
Peter Mogayzel, Jr., M.D., Ph.D., Director of the Johns Hopkins Hospital CF Center and Pediatric Lung Transplantation

Michael Boyle, M.D., F.C.C.P., Director of the Johns Hopkins Hospital Adult CF Program

Drs. Mogayzel and Boyle will address questions about the following topics:

• How to partner with your child to reach your goals in managing CF
• How to partner with your care center in the transition from pediatric to adult care and the varying aspects and concerns with the change
• How to partner with your adult care center to successfully manage CF in your daily life
• How to partner with your care center when considering lung transplantation.

You can submit questions when you register and also during the live broadcast.

Click here to register for the webcast!

Take Your CF Deductions!!!!!

Join KnowCF members members LouLou, VMHoward and Julie in their first video conversation about Taxes and CF! I have not listened to this video yet, but based on the topics covered, I am very interested. I highly recommend checking this out, as a lot of CFers and CF family members are not familiar of what they can and can't deduct on their taxes related to CF!

**Moms/Dads**....definitely check this out if you are unfamiliar of what you can deduct! Look at the Nutrition and the Back at Home topics below!

This topical video series (three segments) focuses on United States tax law and deductions that may be allowed for health reasons. This engaging team has worked hard for your benefit, doing extensive research, sharing their stories, and designing a meticulous yet simple-to-grasp spreadsheet for you to model as you organize your own savings possibilities.

Three of the KnowCF e-Patient members, Lauren, Victoria and Julie have organized information on CF healthcare costs and tax deductions. These Health Opinion Leaders (HOLs) explain which expenses qualify for deduction and how to track expenses. They have created roughly fifteen minutes of engaging and polished footage on this very valuable topic.

These are the topics they will cover: (I have not listed every single topic and question. You can visit the website for more information and details)

1. What sort of medical expenses are deductible?

2. What is AGI or adjustable gross income, and how do I know if I should itemize or just take the standard deduction? How much do I need to have in deductions in order to be able to use them?

3. Can a caregiver use these deductions too?

4. What about special equipment and materials for cleaning my nebulizers?

5. What about things we wouldn’t be doing if it weren’t for CF, such as special disinfecting cleaning products and HEPA filters for indoor air purification?

NUTRITION:
6. Obviously healthy people eat food, how do I know what I can attribute to CF?

9. Are my vitamins deductible?

8. My child drinks nutritional drinks recommended by the doctor. Are those 100% deductible, or must a percentage be deducted that would not be attributable to CF

EXERCISE:
11. Is there a way to deduct my gym membership?

CF CLINIC:
12. the travel to my CF center deductible? Can I deduct miles to and from the doctor?

13. Can I deduct anything related to my transplant?

14. What about when my child is inpatient, can I deduct visitation mileage, parking, hotel and food?

BACK AT HOME:
15. Are home improvements deductible? / Can I claim home improvements that I made as a deduction?

16. Can I deduct the cost of trash?

17. How do I deduct electricity?

Click here to visit the KnowCF website! I personally have never come across this resource website. It branched from the CysticFibrosis.com Website. It looks like it can be very beneficial.

ACCESS - SHARE - GAIN AWARENESS

CF Adult Transition Webcast!!!

Join the CF Community again, as Pulmozyme, sponsors a CF Web Cast!

Thursday, August 27 at 08:00 PM EST

These Web Casts are held frequently amongst many CF organizations! However, I just post about the ones that I feel can be extremely valuable to my readers!

Transitioning from being a teenager to a young adult with CF means you will need to take responsibility for your own care. Dr. Marcia Katz, along with Casey Flaherty, a 25-year-old with CF, and Casey’s mother Paula Flaherty, will provide guidance and strategies to help you and your family manage the transition into adulthood successfully. The webcast will also explore important issues for CF teens and adults, including information on balancing life, work and school and establishing the best possible CF care routine.

Dr. Marcia Katz, Director, Adult CF Center, Baylor College will provide guidance on effectively transitioning from adolescence to adulthood with CF and strategies for improving compliance to medications, exercise, nutrition and keeping a positive attitude. CF patient Casey Flaherty, and her mother Paula Flaherty will share their experiences, challenges and successes in managing CF.

During the webcasts, Dr. Katz and Dr. McColley will answer your questions live. Everyone is encouraged to submit questions live during the webcast or beforehand to get answers and advice from Dr. Katz, Casey and her mother Paula. This event provides valuable information for people with CF, their friends and family.

I know for me, the transition to the Adult CF Care Team really never happened. I was swifted away for transplant, before that became necessary! So I really never had to deal with switching doctors, hospitals, etc. to the "CF adult side." I did have to with transplant, but I think the situation is a little different.

Some CF Centers don't have a separate adult CF Care team and/or clinic/hospital! But even though I didn't experience the "clinical transition", i did experience the physical and emotional transition somewhat! I think "young adult" can refer to any age beginning at the high school level! And I know this transition can be tough! And as I watch my CF friends go through this stage, I want to be there to support them! And one of those ways is to provide them with as much knowledge as possible! In addition, i think others's experiences are key in helping that individual make that transition a successful one! So I hope you will consider checking this webcast out, if, of course, it pertains to where you are in your CF journey! (Even parents can check this out as well)!!!

Click here for more information and/or to register!

CF Webcast/Infection Control

Would you like to learn more about germs that affect people with cystic fibrosis and how to avoid them?

Watch the Web cast to learn the basics of infection control and about Burkholderia cepacia complex, Pseudomonas aeruginosa, MRSA and influenza. It is important to know and use the basic principles of infection control and prevent the spread of germs in the lives of people with CF.

"Germs and the Impact on the Health of People with CF"
Tues., Aug. 11 (8:00 p.m. ET)

The Web cast will feature CF infection control experts:

John LiPuma, MD, Professor of Pediatric Infectious Diseases and
Epidemiology at the University of Michigan

Lisa Saiman, MD, MPH, Professor of Clinical Pediatrics at Columbia
University and NY Presbyterian Hospital

Click here for more information and/or to register!

I think this could be very beneficial (especially to the new CF mommies or the newly diagnosed), so I really encourage you to attend the webcast. Practicing good infection control guidelines are a necessity for Staying healthy for someone with CF. You can submit questions ahead of time that you would like answered.

The Web cast forum offers an opportunity for questions from the CF community to be answered. This educational tool helps to empower people with CF, families and friends to take an active part in CF care through increased knowledge about the research and the highest quality care.