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CF MiniCon: Transplant
Sunday, May 21, 2017
6 p.m. ET | 5 p.m. CT | 4 p.m. MT | 3 p.m. PT

 

Co-Chairs: Valerie Batz and Lauren Guidry
Team: Jerry Cahill, David Guthrie, Lynne Korlewitz, Heather McCoy, Auburn Volz, and Piper Beatty Welsh

 

If you are a person with CF who is at least 18 years old, you're invited to join us in our virtual event space, from your home computer or mobile device, to participate in a keynote panel, group chats, and small video breakouts on transplant issues that are unique to people living with CF. This event is designed by and for adults with CF, and provides a space for open and honest dialogue.

 

To Register online, go to: Mini con: Transplant

 

Our Center's CF Walk was May 1, 2016

  For more details, to donate or join our walk, click here

 

HAPPY SUMMER

 

Image result for images of summer

 

Now that Summer has arrived, we want to work with you to make sure you have a healthy and happy summer.  Here are some tips on staying healthy in the hot months!

    • HYDRATE, HYDRATE, HYDRATE - Remember, people with CF can lose up to 5 times more salt in their sweat than someone without CF. Remember to drink even when you are not thirsty, especially during outdoor exercise.  Drink before, during and after exercise.  Sports drinks with added salt and carbohydrates are great at this time of year.  Children are more susceptible to dehydration to make sure the little ones drink extra!
    • Caffeine does NOT count as part of the total ounces of liquid you drink in a day.  This includes all caffeinated sodas, coffees and tea.
    • Infants dehydrate more quickly than young children and adults so keep your baby well hydrated and in cool clothing.   
    • EAT MORE SALT!! - Examples of foods to add during the summer are: pretzels, salted nurs and seeds. 
    • Know the signs of dehydration and hypoatremia (low sodium levels in your blood)These might include nausea, vomitting, headaches, muscle weakness and cramping.  Call your CF team with any concerns.
    • Medications Keep your medications cool while out and about.  Some medications require refrigeration so make sure you know which of your meds need to be in the fridge.  Others, like enzymes, should be kept at room temperature.  Keep a cooler handy if you are going out and plan to bring your enzymes or other medications.. 
    • Wear your sunscreen!! SPF should be 30. 

     

Family Education Day - April 17,2016

 

This year's Family Day was well attended! We were excited to have Karen Von Berg as our guest speaker.  She gave a great talk on the value of physical therapy in CF. To learn more, click here.

 

Our social worker also gave a talk on Emotional Health and CF and presented information on the new CF Foundation Guidelines.  For more information on this presenation, click here.

 

 

Archived on 6/30/2016

  • Big news from the CF Foundation... The FDA approved the new corrector drug combination, ORKAMBI, on July 2, 2015! For more information from the CF Foundation, click here. 
  • If you would like more information about Orkambi, who is eligible and next steps, please visit http://pi.vrtx.com/files/patientpackageinsert_lumacaftor_ivacaftor.pdf
  • The NJ Chapter of the CF Foundation just posted new information in their newsletter. For a copy, click here
  • Our Center welcomes Dr. Kavita Patel, MD to the pediatric pulmonary team. Dr. Patel comes from St. Christophers in Philadelphia and has a lot of experience in Cystic Fibrosis. We look forward to you meeting Dr. Patel in clinic and in the hospital.
  • The Pediatric Center also welcomes two new respiratory therapists to the outpatient team.  Both Mary O'Brien, RRT and Lori Karin, RRT have many years experience taking care of CF patients in the hospital and we are grateful to have their experience and energy on the outpatient team. 
  • As of January 2015, the Rutgers RWJMS CF Center is now also a designated TDN center (Therapeutics Development Network). Ask how you can be a part of the research!