Blog on Latest Efforts

The following content has been taken from emails to the IFOPA and is been presented as a means to bring readers up-to-date with FOP's plea to Washington. The content has been edited to fit the guidelines of this website and is arranged in reverse-chronilogical order, with the most recent item at the top.

United Healthcare Children's Foundation
Feburary 4, 2007

From the New Jersey Star-Ledger, Tuesday, January 30, 2007
Page 23

The United Healthcare Children's Foundation is offering support to meet the needs of children nationwide with assistance grants for medical services not fully covered by health insurance.

Parents and caretakers across the country will be eligible to apply for
grants of up to $5,000.00 for health-care services that will help improve
their children's health and quality of life.  Examples of the types of
medical services covered by the foundation grants include speech therapy; physical therapy and psychotherapy sessions; medical equipment such as wheelchairs, braces, hearing aids and eye-glasses, and orthodontic and dental treatments.

"The United Healthcare Children's Foundation has already helped more than 375 families and provided nearly $1 million in financial assistance," said Foundation President Matt Peterson.  

"We are excited about the expansion of the program and look forward to the opportunity to help many more children have access to healthcare services that will enhance their health and quality of life."

To be eligible for the grants, children must be 16 years old or younger.
Families must meet economic guidelines, live in the U.S. and be covered by a commercial health insurance plan. 

For more information, visit: www.uhccf.org

Football Fever
September 28, 2006

Today I put the final touches on our up-coming event at Giants Stadium that will benefit FOP Awareness and National Action Week for the U.S. Bone and Joint Decade. National Action Week runs from October 12 - 20 so that is why I have chosen the October 8th date as an official "Kick-Off" for National Action Week in conjunction with our continued efforts for FOP Awareness.

I spent an hour this morning in the Executive Offices of the New York Giants at the Stadium dotting the "i's" and crossing the "t's" and I think I have it all in order. As I've done everything on an individual basis rather than collectively, what I would like to do is formalize our guest list so that everyone knows who will be in attendance:

• The Weldon family from New Vernon, New Jersey.
• The Cali family from Mountain Lakes, New Jersey.
• The Green/Forshtay family from Fort Lee, New Jersey.
• The Stokes/Kane family from Mantua, New Jersey.
• The Licht family from Scarsdale, New York.
• The Rossano family from Oyster Bay, New York.
• The Pullano family from New Haven, Connecticut.
• Dr. Eileen Shore and husband (Dr. Robert Shore) from the University of Pennsylvania School of Medicine.

The 22 tickets that I was given for the "Luxury Box" have been allocated to the above mentioned families with the exception of two (2) additional tickets that were obtained and purchased separately by the Rossano family.

As not to interfer with the above process, eight (8) tickets were obtained separately and they cover the following people:

• Gail Apigo and Gabrielle Apigo (Miss Teen New Jersey Galaxy).
• The Whyte family (Gary, Debbie, Christopher, Eric and Jeffrey).
• Tony Barbera (FOP advocate and IFOPA Treasurer).

All-in-all, we will be a group of about 32-to-34 people. Now that the formalities are aside, here are the details that I know you are looking forward to:

Date: Sunday, October 8, 2006

Place: Giants Stadium, East Rutherford, New Jersey (directly off the New Jersey Turnpike)

Event: New York Giants vs Washington Redskins game

Time/Kick-Off: 1:00 p.m. Meeting Time: 10:00 a.m. to 10:30 a.m.

Incidentals: Pre and Post Game at West End Zone Bubble, located by Gate D / South Tower Large White Bubble with the following markings: RELIABLE - VERIZON WIRELESS

Bubble Requirements: Credentials are required for entry into the bubble so it is essential that we meet around 10:00 to 10:30 that day so I can give you your credentials and tickets to the game. I would ask that everyone either be early or on time because if your late, that means someone has to remain outside and not be inside with all the others. 75,000 people attend the Giants game and a very good portion arrive very early to secure a parking space and attend the hundreds of tailgate parties in the parking lots. So please allow a lot of time for traffic and parking. As the head office mentioned, get there early and have a portable chair in your possession to sit outside and relax. You might also want to walk around and take a look at the elaborate tail-gate parties going on. That's always educational.

The bubble officially opens at 11:00 a.m. and is also available to many other groups and organizations. At the end of the game, everyone is entitled to return to the bubble for post-game activities.

Sidelines: The New York Giants are going to allow the children to attend the pre-game practice and be positioned on the side-lines. These are special passes and we have limitations to how many people will be allowed. I'm still waiting on confirmation of that number. We will be escorted from the bubble to the sidelines somewhere between 11:30 a.m. and 12 p.m.

Coin Toss: As I mentioned in one of my earlier emails, the plan was to have the children attend to the field with the team captains for the coin toss. Unfortunately, that part has not developed. A company owns the rights to that portion and they are not allowing any "Honorary Captain's" to be part of the process that day. We tried and have battled this issue for the past several weeks but our plea fell on deaf ears. Sorry.

Live-to-Tape: The New York Giants want to do some live taping that they will incorporate pre-game the video that we have provided them. Thanks to Jennifer Snow in getting this video produced out in California and thanks to Bill Giannone who graciously offered and paid for the video's production. The video we have produced is 1 minute 30 seconds and the Giants will air that video on the big-screens during certain time-outs through-out the game.

And a special thanks to Linda Daugherty of the IFOPA for all her help, guidance and support. The Giants have also related that they will make pre-game announcements for the two (2) groups they are highlighting at the Stadium that day. FOP is one of them and the other group is Breast Cancer Awareness that the Giants are committed to for the month of October. So whereby we have 32-to-34 in our group, there will be 200 breast cancer survivors in the other group.

Wordage/Logos: Wordage about FOP has been provided by the IFOPA along with their logo and wordage about National Action Week has been provided by the U.S. Bone and Joint Decade, as well as their logo. All has been provided to the New York Giants at their request and will be posted on their web-site and into the Game Bill of the Day.

Luxury Box: The luxury box has been donated to us by my good friend Tim Shinn, President and CEO of United Crane Rentals in Kenilworth, NJ. There are not enough words and not enough time to tell you all the good that Tim does and Tim is a great supporter of all our FOP efforts in NJ. In as much as there are 22 tickets assigned to the luxury box, there is room for many more people. Therefore, our entire group, regardless of your stadium tickets, are invited to the luxury box. For purposes of identification, we will be in: SUITE 239-B. Tim has also provided food, drink and a hostess during our attendance. Tim has promised to stop by the bubble and the luxury box to say hello and meet everyone. He has some pretty good seats down below and will pop-in from time-to-time to meet everyone.

Special Notes: My thoughts are with Ian Cali in hope and anticipation that he will be able to join us that day. Amanda and I have spoken and up until the last moment I will hold Ian's ticket.

And lastly, if you need to contact me the day of the game, I should be up at Giants Stadium early enough to get situated. I will position myself over by the giant white bubble with your credentials and tickets and if you need to contact me, please call my cell.

Look forward to seeing everyone on the 8th.

Save - The - Date
September 7, 2006

For the past five years I've hosted a "Comedy Show" as a fund-raiser for the Weldon F.O.P. Research Fund at the University of Pennsylvania. We have been fortunate to have an annual sold-out performance with about 220 people in attendance.

In light of the fantastic news that came out of the University Research Lab a few months ago whereby they announced that they found the "gene" which is responsible for causing FOP, I have decided to make some changes to what's been done the past five years for my comedy show.

So next year will be different and not only do I ask that you "Save the date" but start to talk it up. Our goal is to make a lot of money so that our dear friends at the University of Pennsylvania can keep advancing in their object to finding a cure and/or treatment for FOP.

SAVE THE DATE

SAVE THE DATE

SAVE THE DATE

Date: Saturday, March 3, 2007

Place: Gran Centurions Hall in Clark, New Jersey

Music: Live Band: Jersey Sound

Comedy: Three comedians

Cost: Tickets $35.00 each. (price remains the same as previous years)

Table: Round Tables of 10 Seats Each

Event: New Jersey's Largest In-Door Tail-Gate Party for FOP

Theme: Butterflies

Room Capacity: Approximately 350 people with sizeable dance floor.

Surprise: ? ? ? ? ? ?

Special Note: The Gran Centurions have been gracious to allow our venue to stay the same in terms of bringing in food. As some of you might know, the event has turned into a large indoor tail-gate party with exceptional arrays of food by the attendees. Last year Hillary Weldon mentioned that perhaps we should make it a contest to see who has the best display and array of food. In keeping with that idea, I have made contact with some media people from newspapers, radio and television and I have asked them to consider being a "judge" for the event. They would roam from table to table and take a sample or two and also take note of appearance and style.

Out of the eight emails I sent this morning, one positve email has been received. So at least I'm off to a good start. There will be three prizes given: First, second and third. Possibly even "good mention," but we'll see how that goes.

The live music being provided by Jersey Sound will be enjoyable. In my quest to spread awareness about FOP in Essex County, I've been to political functions where Jersey Sound has performed at three different affairs. I have entered into an agreement with them and they have reduced their price by some $800.00 for our FOP fundraiser.

Take Care and remember:

Save - The - Date = Saturday - March 3rd 2007

Are you ready for some football?
August 8, 2006

As you know, the New York Giants will be doing some FOP Awareness for us in conjunction with the kick-off of National Awareness Week for the U.S. Bone and Joint Decade. This is slated for Sunday, October 8, 2006, when the New York Giants play the Washington Redskins.

In part of our initial discussion, the New York Giants asked us to produce and provide a two-minute video about FOP that they would play on the big-screens during the pre-game ceremonies. A request was made to Hillary's friend - Jeanne McCurdy - to help in this regard.

After the New York Giants confirmed that the October 8 game was a go, I decided to try my hand and luck with the New York Jets. And I just received a call from the New York Jets, expressing an interest to help raise FOP awareness and help kick-off National Awareness Week. They were very honest in saying their help would be limited and not like what the N.Y. Giants have offered, but in any regard, their offer to help has been accepted and is greatly appreciated.

FROM THE NEW YORK JETS CAMP: The New York Jets would like us to submit the same two-minute video about FOP to them as well, and they too will air it at their home games, on the big screens during the pre-game ceremony. The video will have to be Beta or Beta ST format.

The New York Jets will also put the FOP story on their website, under the "Community" section.

The New York Jets also said that if we have a 'Press Release' about FOP and the U.S. Bone and Joint Decade's National Awareness Week, that we cab submit it to them. Which we will.

So... latest news is that the IFOPA is presently working on the release for the New York Giants and we can use that the New York Jets as well.

-- Gary Whyte

Whyte, Apigo invited to NYC mayor's residence
August 4, 2006

I received an invitation to attend a Festive Summer Barbeque at the New York City Mayor's residence at Gracie Mansion. The invitation came from the Office of the Mayor of the City of New York, Michael R. Bloomberg and the Mayor's Office for People with Disabilities. As you may recall, I introduced FOP to Executive Director Matthew Sapolin of the Mayor's Office for People with Disabilities, and through his efforts there is a link on the NYC web-site to FOP information.

The event is in honor of the 2006 Mayoral Advocacy Awards. I will be attending the event with my son Eric and Gabrielle Apigo. You will remember that Gabrielle was crowned Miss Teen New Jersey Galaxy and has chosen FOP as her platform.

I mentioned to Gabrielle when I spoke to her that between her beauty, Eric's youthfullness and my determination, we should be able to work the grounds real well. The event is in the evening of Tuesday - August 15th.

I'll be sure to have my copy of Newsweek handy to show the Mayor.

-- Gary Whyte

Whyte's FOP Proclamation campaign reaches another milestone
June 29, 2006

Click on the image above to view a full-size version of the Proclamation. (Adobe Acrobat required for viewing. Click here to get it. )

I'm preparing to leave the office in a few short minutes, leaving for vacation and not returning back to work until July 17th. For this blissful period, I will be without email, and sometimes, that's a good thing.

But before I leave, I would like to share with you the United States Senate Proclamation received today from U.S. Senator Robert Menendez of New Jersey.

Whereby I had informed the Senator's office that the "FOP Gene" was discovered by the scientists and researchers at the University of Pennsylvania, they have omitted that from text, but the good part is that they included the great news of finding the gene into the text.

Of course, we all know who is responsible for that and in our eyes, that's all that matters. But I was glad to see their acknowledgement of all the good that the U.S. Bone and Joint Decade does and equally glad that this has reached the U.S. Senate Floor.

Take care everyone and will re-group sometime at the end of July.

Pullano, Whyte, FOP recognized by Connecticut State House, Senate
April 7, 2006

Left to right: Ms. Holly Pullano, Connecticut State Rep. Steve Fontana and Mr. Gary Whyte.

On April 5, Connecticut State Representative Steve Fontana recognized Ms. Holly Pullano of North Haven and Mr. Gary Whyte, on the floor of the House of Representatives to acknowledge and help publicize Ms. Pullano's fight against Fibrodysplasia Ossificans Progressiva (FOP), a rare debilitating disorder.

Later in the day, State Senator Leonard also recognized Ms. Pullano and FOP on the floor of the Senate. As a result of these introductions, each and every member of the Connecticut General Assembly is now aware of FOP.

* * *

Yesterday (April 6), I had the distinct honor of accompanying Holly Pullano to the Connecticut State Capitol in Hartford for FOP Awareness.

At the invitation of State Representative Steve Fontana, Holly and I were introduced upon the start of yesterday's House Session.  Representative Fontana told his fellow colleagues about Holly and her battle with FOP and about FOP in general. 

In our awareness campaign, this was a major step and boost to our endeavors. May it further be noted that Rep. Fontana told his colleagues about the support Holly has received, including and not limited to the citation that various state officials have adopted on behalf of FOP.

May it further be added that after our introduction in the House, we then met up with Senator Leonard Fasano and he duplicated our introduction by announcing our efforts during the opening session of the Senate.

This is a tremendous uphill battle we face each and every day and efforts like those of Representative Fontana and Senator Fasano make it that much easier.  

On the Federal level, a FOP Reception was held in the U.S. Capitol on July 13th 2005, which was attended by Holly and other FOP patients in the Northeast. The reception was in the Senate Wing of the Capitol and was sponsored by Senator Frank Lautenberg (NJ), Senator Rick Santorum (PA), and Congressmen Mike Ferguson (NJ) and Rob Andrews (NJ).

This was a bipartisan reception and attended by many, including and not limited to: Senator Jon Corzine, Senator John McCain, Senator Lincoln Chafee, Senator Craig Thomas and Senator Hillary Clinton to name a few.

Holly and I are currently working with both Rep. Fontana and Senator Fasano to further our awareness campaign in Connecticut.

-- Gary Whyte

Whyte receives 300th Proclamation
March 3, 2006

Back in December 2002 I sent a packet of information to all 566 New Jersey Mayors and asked them to consider adopting a "Proclamation" on behalf of FOP and the United States Bone and Joint Decade.   Fibrodysplasia Ossificans Progressiva is a rare and incurable disease that afflicts 13-year-old Whitney Weldon and twelve other children and young adults in the state of New Jersey.

On May 12th 2003 we received our 100th Proclamation. On November 4th 2003 we received our 200th Proclamation. I'm extremely proud to announce that on March 3rd 2006 we received our 300th Proclamation.   In addition to that, all 21 County Freeholder Boards in the state of New Jersey adopted a Proclamation-Resolution as well. There remains
only 266 New Jersey Mayor's who have not responded to our Humanitarian request.

On another note: On Saturday, March 4, 2006, I will be hosting the
5th Annual Comedy Show to Benefit the Weldon FOP Research Fund.   The event is sold-out with 240 people attending!

Also, New Jersey Correspondent Monica Miller of WCBS News Radio 880 conducted a telephone interview this morning regarding FOP and the upcoming Comedy Show. She mentioned that it will most likely play all day on Saturday, March 4, so if you have some time, tune in and listen! 

Thanks and Regards.

-- Gary W. Whyte

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