| Come Join Us For A Huge Event on June 13th (Go to our CURRENT EVENTS CALENDAR LINK AND BELOW !!! |
JUNE 13TH FIRST ANNUAL BIKE RUN AND AFTER PARTY. DON'T MISS THIS ONE!! BE THERE!!
January News: Caren Sue Peet is offering free adoption info for the Month of January.
Caren Sue Peet L.M.S.W. Adoption Specialist 631-366-3434.
Caren is a remarkable woman who has adopted two children of her own. It was her choice knowing the problems she incurred and the unfortunate unknown to her of having her own biologically that made her life decison.She is an incredible Mother ,Person.Friend and Experienced Adoption Specialist. She is kind enough to offer her help this month free of charge
to consult with and give information on the process of adoption. Caren has made many families
dreams come true and for herself it was her life decision and blessing when knowing NF could
50% chance be passed on. It is an individual decision and a heartfelt one at that. If you have questions or interests for present or future, take this opportunity to call her.
CAREN SUE PEET / VOLUNTEER AND FRIEND OF THE YEAR 2008
Caren Sue Peet who was introduced to AGFW, Inc and myself from The NF North East Chapter for help with her own NF problems has been working endless hours helping us with the foundation. She is an amazing woman who helps Children,Orphans,Adoptions,and unwanted pregnancies, delivering babies in the back of cars at all hours of the day and night. She and I have become best friends and even with the horrible pain she suffers she never stops with ideas and
collecting everything she can to help us now as well. We work round the clock sometimes emailing and contactine everyone for HELP! I am helping her get the medical attention she needs for her NF.She is suffering with horrible pain and Vitamin Deficeincy as well as many lessions that are growing everywhere on her body each day. She has been so upset as ,the only experience with NF was seeing a Dr. at 20 years old , almost 25 years ago. She has now had a PET Scan and other testings and will see Dr. Aron and Dr. Wallace at MT Siani in NY City in the near future. Ereyone take the time to say a prayer and wish her well as she really is having a horrible time and can barely move,yet her "FIGHT" for these children across the Globe never ends,regardless of her own very serious medical problems. If you wish to send her a note you can at our contact page or mail to our address. I thank all of you and Caren you are my Best Friend and Hero!!!! Love you Kristen
WE HAVE MANY NEW THINGS GOING ON AT OUR SITE
PLEASE TAKE THE TIME TO GO THROUGH IT. WE ARE ADDING STORIES OF THOSE
WITH NF AS WELL AS THOSE WE HAVE LOST TO THIS DISORDER. IF YOU WOULD
LIKE TO SHARE YOUR STORY PLEASE CONTACT US AND WE WILL ADD IT TO THE SITE.
I WANT TO THANK EVERYONE WHO HAS BEEN SHARING THEIR LIVES WITH EVERYONE.
WE HAVE RECEIVED A TREMENDOUS RESPONSE TO THEM AND MORE QUESTIONS
REGARDING AWARENESS. THANK YOU!!!
NEUROFIBROMATOSIS
JUST ASK US !!!
at
WWW.ASHLEYGRAZIANO.COM
WE WOULD LIKE TO HEAR YOUR IDEAS AND COMMENTS FOR WHAT YOU WANT TO FIND ON YOUR NF SITE. GO TO CONTACT US AND
PLEASE SHARE YOUR THOUGHTS,IDEAS,WHAT YOU FEEL YOU NEED. IT IS IMPORTANT TO US THAT AS WE ARE GROWING THAT THE NEEDS ARE MET FOR THOSE WHO ARE COMING HERE TO GET HELP,INFORMATION,A FRIEND,ETC. THANK YOU IT IS YOUR SITE SO TELL
US WHAT YOU AND YOUR CHILDREN WANT!!!!! THANK YOU
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| TOGETHER WE CAN FIND A CURE! |
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GO TO OUR CURRENT CALENDAR EVENTS LINK AND BELOW FOR OUR FIRST ANNUAL BIKE RUN AND AFTER PARTY BLOWOUT!!!!! JUNE 13TH 2009 COME JOIN US FOR A DAY OF NOTHING BUT FUN AND SOMETHING FOR EVERYONE.
OUR GOALS THIS YEAR! This year we are working to help the Neurofibromatosis, Inc. Northeast Chapter get New York Governor Mr. David Paterson to sign a proclamation for New York to recognize May as National Awareness Month in 2008 . It is so important for awareness and to help the thousands of New York residents that are living with NF as well as born each year with this genetic disorder.
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The Ashley Graziano Foundation For Well Being, Inc. is Not For Profit and began in 2004. We are a "Support System" for families who face the news that their child or children have been diagnosed with Neurofibromatosis,Cancer,and any life threatening illness. The Foundation Family,help the family,child,siblings, and friends dealing with these difficult issues. We try and go the "Extra Mile" talking the families through the process of what lies ahead. Each situation is unique yet all have something in common. The common factor is that we all want, what is best for our children, from medical care, guidance,support, patient advocacy as when you get the news of an illness it is difficult to put things in prospective as the emotions are so high. Questions run through your head such as, What do we do? Where should we go? Should we get another opinion? What is going to happen to my child or loved one? How will we pay for these expenses? There are emotions of anger,fear confusion,concern,sadness,depression,anxiety, just to mention a few. All of this is normal. It also hits everyone at different times. We are here to try and help put the puzzle together and guide the families through it. It is also very difficult because your loved ones and friends sometimes are the last you can depend on for that support as they are going through it on some level too,and for some they just can't or won't address it to you as if it isn't happening. This can be frustrating,hurtful and can make you angry but understand that everyone does not handle situations the same. That is why we are here. Families can get advice, vent,and ask why me as well as everything else that you deal with in the process.
My advice ,as I lived through this was to go out and get a journal (anything at all that you can write in). Write everything down
questions,concerns,things you have noticed. Changes in your child, behavior,eating weight loss etc. Keep it with you everywhere
you go. The reason for this is when you finally get in front of the Dr. or Team of Dr's your mind seems to go blank. You remember
bits and pieces and feel like you know your forgetting something. Most of the time you are. It is hard then to get most of the Dr's back on the phone to ask them these questions that are running through your head and to you, you need immediate answers.
Waiting days,weeks or even months depending on the circumstance will create more stress as you are holding more in and still new things are hitting you each day. I also tell everyone don't read every statistic and listen to every sad story. They seem to gravitate to you as that is what people feel they can correlate to or you just look for it on the television,newspapers computers etc. Again this is normal and to me "Knowledge is Power". but every case is different and just for example someone knows or you may even that has had Cancer or similar illness, the same results,treatments or outcome may not be the same at all, even if it is a similar diagnosis. Finding the right physicians is "KEY", if they have treated similar cases,they have people you can speak with and you feel comfortable is a big weight off your shoulders. Getting the proper rest (even though most will chuckle at that) is very important. Eating properly,and caring for yourself if you are the primary caregiver is necessary for you to help the child or children or loved one who is sick.Finding someone you trust to stay with them even for a few hours is necessary, you need sometime to get away and just release yourself from the direct contact. It is hard to do, I know first hand, but you have to. As a Mother who has been taken down this road in every aspect the stress and emotions are comparable to nothing in life you have ever dealt with.
Going and doing the most simple of tasks, post office,doing bills,grocery shopping becomes monumental.
Remember that this is all normal and can hit you at anytime. Finding a support group or someone to talk to is important.
Please know that we are here for you to help in anyway possible from financial,emotional and advocacy support. What we can not offer or do we will help in assisting you to find it if it exists. I wish I could make each and everyone of you never have to go through this
in any aspect but you will find that the love and support of AGFW,Inc. will help in anyway we can and will be there for you.
We are not physicians but have gone through this ourselves and we consider everyone part of "OUR FAMILY" to help fight for our children and loved ones as they are our future. We do have many resources to go to and will for you whenever needed.
Just remember to keep fighting,stay positive and call or email us whenever you need any help at all.
God Bless You
Kristen Parker
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