Help One Love One (HOLO) – June 2017 Newsletter

HELP ONE LOVE ONE (HOLO)  – JUNE 2017 NEWSLETTER

 

FRANK DEFORD, A CHAMPION FOR CF, DIED MAY 28th

Frank Deford, often considered the finest sportswriter of his generation

for his detailed psychological profiles of athletes and coaches, who also

won acclaim for his novels, his television and radio commentaries and

for a heartfelt book about his daughter’s struggle with cystic fibrosis,

died May 28 at his home in Key West, Florida.  He was 78.

 

The Deford family has always been special to me and my family because their daughter, Alexandra, died hours after our son was born. She died January 19th, 1980 at the age of 8 years old.  The Deford’s CF journey was ending as ours was beginning.  I didn’t know that detail the day my son was born but a few years later the made for TV movie of the Deford’s journey, Alex: The Life of a Child was telecasted.  My husband and I put our two children to bed that night then watched the story of the Deford’s with tears streaming down of faces for most of the two hours that it aired.  Until that day we didn’t know anyone else who had a child with cystic fibrosis but as we watched the Deford’s story we felt a little less alone in our cystic fibrosis journey.

I remember hearing the little 8 year old actress, Gennie James, coughing and I instantly identified with that cough. They actually recorded a real child who had CF coughing and dubbed it over Gennie’s cough.  Frank Deford, I later learned, insisted upon having a real CF cough in the sound of the movie and I’m glad he did.  As a parent he understood the agony associated with that life-robbing cough.

Frank will always be remembered as a wonderful and talented sports writer but the cystic fibrosis community knows he and his wife Carol as champions of bringing awareness and dollars toward finding a cure.  I know that my son is still alive, in part, because of the research that has been forwarded because of the millions of dollars the Deford’s brought through the door of the Cystic Fibrosis Foundation, whose sole mission has been to find a cure for this fatal genetic disease.  Frank, being a professional writer, said it was only natural that he bring awareness of the disease after his daughter died.  He also said he thinks Alex would have loved being in the spotlight because “she was sort of a little ham”.  Frank served for many years on the board of directors of the Cystic Fibrosis Foundation

Many advancements have been made in cystic fibrosis care since 1980 when Alex slipped away from this life.  In those days the life expectancy of a person with CF was 8-10 years.  Now 37-40 is a reasonable expectation with hope that the science will continue to advance to higher years for the very young.

And that is how it goes with a journey like cystic fibrosis.  As the decades pass knowledge and treatments lead to cures.  But it comes with a high price, hundreds of thousands of lives.  The only thing that ever really changes the landscape of a disease like CF is dollars and awareness.  Frank Deford knew that truth. Dollars hire talented scientists and doctors that figure out how to fix the problem.  And dollars help sustain people with CF until a cure is found.

Help One Love One’s mission is all about sustaining life until that cure can be found, and even then there will be people with CF who have been injured by the disease for decades thereafter.  It is vital that we continue to help, love and care for the brave warriors of cystic fibrosis.  And we are so thankful for our partners who, like Frank Deford, willingly reach out and help when called upon.

You, our partners, may not have the knowledge and skill to cure a disease but your dollars can fill a person’s bloodstreams with vital lifesaving food that pumps nourishment to every cell within their body.  That food is time, precious time, time that can’t be given back once it is lost.  So I ask you once again to continue partnering with us by writing your check of any amount today so our program can continue to bring hope and life through nutrition to a person fighting for their life.

 

YOU NEVER KNOW UNTIL YOU TRY

For 8 months our 4 person Med City Pasta Fest Committee labored to create our largest fundraising event to date, an all-you-can-eat spaghetti dinner for the 2500 marathon runners who race in Rochester over Memorial Day weekend.  We were prepared to serve up to 500 meals.

2500 runners picked up race packets with our flyers in them.  We sat at an expo booth advertising the dinner for 7 hours the day of the event.  The weather was warm and sunny.  The only thing missing that day was people coming through the doors to eat spaghetti.

You can imagine our disappointment when only 20 meals were actually purchased.  At tear-down time we made some quick calls and were able to donate a large amount of food and water to the Rochester Woman’s Shelter and a local food shelf.  Paper products were donated to the church where we served the meal.  Nothing went to waste.

After our few actual expenses were totaled we discovered that we ended up earning $6.00.  We were thankful to not have lost money.

There is always a silver lining if you look for one and we all agreed that our relationships with volunteers were strengthened as we all worked together and had time to visit while the spaghetti sauce simmered.  You never really know if an event is worth doing until you actually try.  Now we know that this event isn’t worth our effort. As always, we continue to stay positive and move forward.

We’re thankful to the individuals and businesses listed below who donated food and supplies, and to the many volunteers who donated their time and talents.

 

Byron Marketplace         Culligan Water                   Menards              The Hubble House

Silver Lake Foods             Olive Garden                     Party City             The Gingerbread House

Natural Grocers                Fairway Grocery               Sam’s Club          Perkins

Thrivent Financial             Costco                                  Walmart               Cub Foods

Steve Joswiak State Farm Agency                             Wally & Peggy Arnold

Nadene Larson who donated in Memory of Matthew Larson whose life was cut short by Cystic Fibrosis

0 Comment   |   Posted in Newsletters July 14, 2017









Analytics Plugin created by Web Hosting