Spring Summit a Success
Our annual spring summit was held on Wednesday May 30, 2001 at
5:30 p.m. at Providence Hospital and Medical Centers Fisher Auditorium.
Our second annual spring event was deemed a success by all of our
participants! We had an excellent turnout from patients, families
and vendors.
We want to thank all of our supporters for making this summit such
a success. Special thanks needs to be paid to Elizabeth Michalski
who demonstrated such grace and courage in sharing her story of
her double lung transplant. You give us all strength and determination
to “Live Our Best Life.”
We also had the wonderful opportunity to unveil our new web page:
www.mylungdoc.com or www.fixmybreathing.com. Now you can visit us
on the web 24 hours a day, 7 days a week!
Please call or e-mail Julie at 248-424-3000 ext. 3641 or Jfeldman@Providence-hospital.org
if you wish to continue to receive a hard copy of the newsletter.
Otherwise, the newsletter will be available online only.
New Drug Announced
Antex Biologics Inc. announced on June 27, 2001 that a U.S. patent
has been issued on a new class of peptides that appear to suppress
the harmful secretion of mucus caused by many lung diseases. The
same company had announced one year ago that they had partnered
with the University of Maryland to develop peptides to treat symptoms
associated with lung disorders. These new drugs will fill a void
in the market. Currently there are no medications that are available
to specifically control this type of mucus hypersecretion.
Looking for Something Calming
Sent to us by a fellow CF patient, a computer generated beautiful
series of pictures and phrases, which reminds us about life outside
of CF.
Visit: www.reata.org/interview
New Research
Ivanhoe Newswire: June 18, 2001
Have you been praying lately? Researches at Duke University under
Dr. Larry Dossey, author of “Reinventing Medicine” and
“Prayer is Good Medicine” revealed the results of a second
phase study that documented the power of prayer to be quite real
in the medical setting. www.ivanhoe.com/docs/newsflash/thepowerofprayermoreevidence.html
BMJ Specialty Journals: June 18th 2001
Cooking with gas may have a harmful effect on the lung function
of those who are susceptible to allergies. A study looked at 700
girls, age 11-13 in Italy to note how often they were present in
the kitchen when the gas stove was being used. Lung function tests
and skin prick tests were used to note susceptibility to eight common
allergens. The association was not present in boys, but in girls,
there was a reduction in lung function that correlated with the
time spent in the kitchen. The morale of the story, be sure there
is adequate ventilation when using gas appliances.
Reuters Health: June 14th, 2001
Socioeconomic status remains the strongest predictor of disease
course and severity in CF patients says lead researcher Dr. Michael
S. Schechter at Wake Forest University School of Medicine. Despite
CF being a genetic disease, economics play in on several levels.
Like with many other chronic diseases, those who have a decreased
economic status are often exposed to more tobacco smoke, poorer
nutrition and more viral respiratory infections. The CF population
is fortunate to have assistance from pharmaceutical companies in
the field.
CFFoundation
The Williamsburg Conference took place during the first week of
June. The conference serves as the grounds for the brightest and
best scientists to exchange ideas on the battle with CF. The focus
of this years conference was the use of biotechnology tools to discover
potential CF drugs. To read more visit: www.cff.orgnews0106a.htm
Second Wind Educational Conference
The 5th annual Second Wind Lung Transplant Association will be
held September 7-9th in San Diego , California . The goal of the
meeting is to allow patients to learn about the lung transplant
process and connect with others from all over the country. Some
of the topics include: Photopheresis, living lobar, PFT’s,
current and future
medicines, post transplant complications, caregiver issues and
much more. For more information visit: www.2ndwind.org/conference5.htm
The lung transplant handbook that your fellow CF patient mentioned
at the spring meeting is available at www.2ndwind.org
The Hurdles for Gene Therapy
Reuters Health: June 2001
The American Society of Gene Therapy met in Seattle Washington
between May 30th and June 3rd of this year. Scientists stated that
many hurdles need to be overcome before gene therapy is a viable
option of treatment for CF patients. Dr. Savio Woo is the director
of the Institute for Gene Therapy at Mount Sinai School of Medicine.
Dr. Woo is troubled, like the rest of us, by the way researches
make announcements of the discovery of certain genes, which is monumental,
but then go on to promise cures or treatments based on that gene
within the next 5 years. “Medicine moves much more slowly than
that.”
Gene therapy trials are “difficult and complex”. There
are many regulatory issues at hand as well. The hurdles of gene
therapy are often linked to the unrealistic message that is originally
portrayed to patients. The best bet of the CF community is to continue
fundraising and research to move us along the way. All races have
their hurdles!
A Fun Summer Dessert to Make on the Grill:
Strawberry-Rhubarb Crumb Cake
Strawberries are high in vitamin C, which has been shown to be
a deterrant to some forms of cancer and also helps prevent oxidation
of LDL or bad cholesterol. They are a good source of fiber. But,
most importantly, they are one of the few sources, along with grapes
and cherries, of ellagic acid, a compound which has been shown to
prevent carcinogens from turning healthy cells into cancerous ones.
Rhubarb is also a great source of calcium and a colorful addition
to your diet.
| Ingredients: |
 |
3 cups strawberries
2 cups rhubarb
1 cup sugar
cinnamon
1/4 teaspoon nutmeg
|
Spray a 8x8 inch grill safe baking dish with cooking spray. Mix
together the sugar, flour, butter (cut into pieces), oats, cinnamon
and nutmeg. Arrange fruit in the baking dish and cover with mixture
evenly. Cover with foil and place on preheated grill. The temperature
should be around 350 degrees. After 20 minutes remove foil and continue
cooking for another 10 minutes. It's done when the fruit is tender
and the top is a golden brown. If the grill gets too hot prop the
lid open an inch or two.
Cystic Fibrosis Monthly Newsletter
Providence Hospital Adult CF Clinic
Julie Feldman, MPH, R.D., 248-424-3000 ext. 3641 |
