CF Awareness Month: CF Resources

CF Community Resources

Blooming Rose Foundation- The Blooming Rose Foundation's mission is to provide social services, positive contacts and hope to families immediately after diagnosis.

 Boomer Esiason Foundation- The Boomer Esiason Foundation is a dynamic partnership of leaders in the medical and business communities joining with volunteers to heighten awareness, education and the quality of life for those affected by CF.

 Breathe 4 Tomorrow- Breathe 4 Tomorrow Foundation is a non-profit organization dedicated to helping families and individuals in need due to Cystic Fibrosis.

 Cystic Fibrosis Foundation- The Cystic Fibrosis Foundation (CFF) provides information about living with CF, treatments and research. The CFF assures the development of the means to cure and to control CF and improve patients' quality of life.

 Cystic Fibrosis Lifestyle Foundation- CFLF provides avenues toward healthy and active lifestyles through recreation, thereby educating adolescents and young adults with CF on psychological, social and emotional connections between lifestyle and health.

Cystic Fibrosis Research, Inc.- The Cystic Fibrosis Research, Inc. is a community of families, professionals and volunteers committed to funding cystic fibrosis research, providing educational and personal support and improving the quality of life those with CF and their families.

 Cystic Fibrosis Worldwide- Cystic Fibrosis Worldwide (CFWW) is dedicated to improving quality of life and life expectancy for persons living with cystic fibrosis globally. CF Podcast- Jerry Cahill (50+) shares stories on how he, and others with cystic fibrosis, are LIVING BREATHING SUCCEEDING with CF. The podcasts consist of interviews with teens and adults with CF, parents and caregivers, where they discuss such topics as exercise, nutrition, careers, marriage, starting a family, lung transplants, and CFRD.

 Moganko for CF Awareness- A website great for kids (and adults) full of fun videos that teach people with cystic fibrosis the importance of taking care of themselves every day so they can stay healthy. Parenting Children With Health Issues- Free audio, articles and other resources to help parents discover how to raise happy, healthier kids. Based on the popular Love and Logic ® parenting program created by Jim Fay and Foster Cline, MD. R

Rock CF Foundation- The Rock CF Foundation utilizes the arts, entertainment, fashion and fitness to support research initiatives and heighten public awareness in the fight against cystic fibrosis. Tips for CF Parents- Provides tips and resources for parents of children with CF. Lisa C. Greene is the mom of two kids with CF, a parent coach and co- author with Foster Cline MD of the award-winning Parenting Children with Health Issues. USACFA- United States Adult Cystic Fibrosis Association Inc. (

(USACFA), is a non-profit organization, run by 12 volunteer Directors who all have CF. Since 1990, USACFA has published a quarterly newsletter, CF Roundtable, offering hope, support, and news in the world of cystic fibrosis.

American Gothic II

So, we have this creepy abandoned house down the road, that, paired with the classic painting "American Gothic" inspired this fun afternoon of picture taking. 

Don't forget your fun side, as adults, we too often do!

Only One More Week!

NYS Unveils New Online Service to Increase Organ Donations

New York State Unveils New Online Service to Increase Organ Donations
Originally printed at http://www.wbng.com/news/state/146854525.html

By WBNG News
April 10, 2012

(WBNG Binghamton) The New York State Department of Motor Vehicles and State Health Department on Tuesday announced that New Yorkers can now easily enroll in the State’s Organ and Tissue Donor Registry online through MyDMV.

The announcement was made in conjunction with New York Governor Andrew M. Cuomo designating April as “Donate Life Month” in New York State to honor organ donors, organ procurement agencies, and eye and tissue banks whose efforts are saving lives. A media event was held at the State Museum in Albany to unveil the new system and encourage people to register as organ donors.

This new service will reduce barriers to potential donors and increase life saving transplants. Currently, more than 2.7 million New Yorkers are registered as organ donors, but that number represents only 18 percent of the possible donors in the state. The national average is 42 percent.

“The need is great,” said DMV Commissioner Barbara J. Fiala. “More than 113,000 people in the United States are waiting for organ transplants, including almost 10,000 New Yorkers. Every day, an average of 18 people die while waiting for organ transplants in the U.S., and every 10 minutes another name is added to the waiting list. Each month, more than 40,000 generous New Yorkers sign up as organ donors through DMV. But to meet the need, we must do better.”        

“Organ donation is truly lifesaving,” said State Health Commissioner Nirav R. Shah, M.D., M.P.H. “One person who donates organs can save up to eight lives while a tissue donor can improve 50 more lives by restoring eyesight, helping fight infection in burn patients, and preventing the loss of arms or legs. Thanks to Governor Cuomo and a renewed collaboration among state agencies and stakeholders, we have created an online option that takes just a few minutes to complete, but will significantly impact the thousands of New Yorkers who are waiting for an organ donation.”

The State has also released a Request for Proposals (RFP) to select a vendor organization to assume the administration and operation of the New York State Donor Life Registry.  The vendor would lead a public-private partnership to expand the organ donor base through greater marketing and program efficiencies.  The MyDMV system will be a core component of future operations.

MyDMV, launched by the Department of Motor Vehicles last September, provides DMV customers with secure access to a variety of online services. A MyDMV account requires you to enter personal identification information that DMV can use to verify your identity to create a single, secure username and password. In addition to registering to be an organ donor, the benefits provided with a MyDMV account include changing your address, signing-up for registration and inspection renewal reminders and obtaining a copy of your driving record.

The New York State Organ and Tissue Donor Registry, or Donate Life Registry, is a confidential, computerized system that maintains a list of an individual’s consent to donate his/her organs upon death. Under State law, the registry can only be accessed to determine an individual’s donation status after death and only by a federally approved organ procurement organization or licensed eye and tissue bank. Enrolling to be an organ donor will not affect one’s medical care and/or funeral arrangements, and there is no cost to the donor’s family. Anyone over age 18 can sign up to be a potential organ donor, regardless of their medical history.

During the online sign-up process, prospective donors will be required to provide basic information found on their license or non-driver ID including date of birth, zip code, and last four digits of the Social Security number. Procedures and controls built into this process ensure the authenticity, integrity, security and confidentiality.

Organs for life-saving transplants include heart, liver, kidneys, lungs, pancreas, and small intestine. Examples of tissues that could save or enhance someone’s life include eyes and corneas, heart valves, bones, and skin grafts. Organs and tissues are distributed fairly and equitably based on medical criteria. Financial or celebrity status has no bearing on determining who receives a transplant.

Those who register through MyDMV do not need to print, sign and mail their registration application to the New York State Department of Health, which maintains the Donate Life Registry. Customers can still sign up by mail or at any DMV office. And, while most donors enroll through the DMV when they get or renew their driver licenses or non-driver ID cards, potential donors can sign up anytime.  

A special registration table will be available at GNYADA’S New York International Auto Show at the Jacob Javits Center in New York City from Thursday, April 12 through Sunday, April 15. Staff and volunteers will be on hand to help people sign up to be organ donors.

In addition to enrolling through MyDMV, New Yorkers may also enroll by mailing in a registry enrollment form available on the DOH’s Web site. Enrollment may also be facilitated by contacting a local organ procurement organization or tissue bank or by filling out a voter registration form.

The effort to increase the number of people who sign up to be organ donors has the support of  several important groups that were also represented at the announcement including the New York State Association of County Clerks; the New York Alliance for Donation and the New York State Auto Dealers Association. Celeste Sierad, a Capital Region resident who received a life-saving liver transplant, also participated in the announcement.

Paul Piperato, Rockland County Clerk and President of the New York State Association of County Clerks said, “I am proud to represent New York State’s 62 County Clerks who are advancing the Organ Donation Registry’s efforts to save lives. I hope that other New York State residents will join us in this most worthwhile endeavor.”

Victoria Adler, RN, Board Chair of the New York Alliance for Donation and Executive Director of the Lions Eye Bank at Albany said, “95 percent of people who enroll in the Registry do so through DMV. Governor Cuomo, Commissioner Fiala and Commissioner Shah are making a significant difference with coordinating their efforts to increase the number of enrollees by implementing the MyDMV portal. The membership of the New York Alliance for Donation is so thankful for the hard work that this administration, as well as so many others at the DMV and DOH have been doing to help increase donation rates.”

Rob Certilman, Chair of The New York State Automobile Dealers Association said, “What is our purpose in living if not to ultimately help our friends and neighbors? We must donate life to others in desperate need when our organs can no longer be of use to us.”

Celeste Sierad, a liver transplant recipient from the Capital Region said, “As a transplant recipient, I am thrilled that New York State and the DMV have made it easier for New Yorkers to register their decision to be an organ and tissue donor. Thirteen years ago, my life was saved because a young man decided to donate his organs when he received his first driver’s license. I know that allowing New Yorkers to sign up to be a donor online will help save the lives of the thousands of people waiting for a life-saving transplant.”

Spring has Sprung!

So, it is only March, and we had an 80 degree day yesterday.  I don't know whether to be thrilled or terrified.  I hope this isn't a sign that we will have a brutal summer.

For now, I am just enjoying it.  There is nothing like opening all the windows and letting the fresh air in, it just makes you feel healthy!

Look who already popped up to say hello!  I love the first flower of Spring!