./thank you sponsor 2017 sign.docx      

WELCOME TO PKU HELPING HANDS, INC.

On behalf of the Burniche family and the entire board of directors, we are proud to announce that PKU Helping Hands, Inc. has finally been established. Starting a non-profit for the PKU community has been something important to the friends and family of Logan Burniche since he was born.

 

IMPORTANT ANNOUNCEMENT: We are happy to announce that PKU Helping Hands has been granted 501 (c)(3) status by the Internal Revenue Service (IRS). Already a not for profit organization based in New York, this step will allow our organization to apply to grants from public and private institutions as well as make your contributions to the organization tax deductible!!! 


            

 
 

"DANCE IN BLUE FOR PKU" Soiree
 

I want to take a minute to thank EVERYONE who attended the “Dance in Blue for PKU” Soiree last night. The turnout exceeded our expectations. Each person who attended gained awareness of PKU, which was our goal. Danielle Mazzotti, James Carroll, Erin Lozo-Ogden, Joe Burniche, and I are honored for your loyal support to our organization.

To our guest speakers, Logan Burniche, Mae Rogers, and Katherine Delpho Marra, a special thank you for sharing your stories, knowledge and for educating others.

To those who donated items to raffle, they were a huge hit!!! You're amazing!!!

To our Sponsors & Vendors thank you for your continuous support.

We look forward to seeing you all at our future events!

 
 
 
 
June 17, 2017 
 
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We would like to thank all of the hole sponsors, those who donated and participated in the 2017 Beer Belly Bob's Golf Scramble. We raised over $7900 for our organization. We couldn't have done it without the help of our community, friends and family. For a list of sponsors, please click on the sponsor tab at the top of the page.


 
 
 
 NPKUA NEWS:
Have you checked out the new PKU Patient Registry? This unique registry offer surveys about your PKU diagnosis, medications, diet, and more. For more information, please visit:
 
 
 
 
BIOMARIN NEWS:  
BIOMARIN RELEASES RESULTS OF PHASE 3 TRIALS FOR NEW PKU TREATMENT. This is an advancement that many have been waiting for. Let's hope that this can get approved through the FDA and allow patients to begin treatment.
 
 
 
 
 
 
 
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PLEASE VISIT THE LINK BELOW. THIS IS AN URGENT ADVOCACY ALERT-PLEASE CALL CONGRESS NOW BEFORE THE AHCA VOTE!!
 
 
 
 
 
 
 Another way to support PKU Helping Hands:


                                                       
 
 
    
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 Thank you Meaghan Rogers for running a half marathon in support of  PKU Helping Hands.


 

May is PKU Awareness Month! In honor of those with PKU, for every $25 general donation that we raise on our "website", PKU Helping Hands will donate a gift card to a patient to use at one of their favorite low protein food distributors.

Also, wear BLUE to support PKU. 

 

     

 
DRUMROLL PLEASE.....

 

 THE AWARD GOES TO ONE OF OUR FAVORITE NURSES!!! 
 
 

It is with great pleasure that I am able to share a piece of news with you today regarding Cheryl Clow, RN in Genetics.  Cheryl Clow was recognized today by James Barba , CEO of Albany Medical Center as Albany Medical Center’s Employee of the Year for 2013!  

To receive Employee of the Year is a tremendous commendation which recognizes the gifts that Cheryl brings to the department as an employee and individual on a daily basis.  Cheryl was not only nominated for this award by her colleagues but by patients and families that she has worked with over the years that she has been at Albany Medical Center. 

Cheryl’s commitment to patient and customer service and ability to provide care in a manner that embodies the spirit of Albany Medical Center were outlined in the letters that the committee received. She was chosen from a pool of candidates that included the hospital, the college, and the center.  The many strengths that Cheryl brings to her exchanges with patients and unwavering commitment to best care sealed the nomination .

 



VACATION!

*Get a note from the doctor/dietician so that you can travel with your food and formula

*Make sure all accommodations offer a refrigerator, microwave or have an area that "allows" their staff to warm up your low protein food (some accommodations will not allow this due other allergies)


*Don't forget your scale, measuring cups and/or spoons and most importantly your low-protein book or app (now available on many smart/iphones)

*Disney: The phone number to call to make your dining reservations at Disney’s Table Service restaurants is: 407-939-3463. You need to indicate the special diet

requirement as PKU. Click on the link to see a sample menu as Cambrooke Foods have been working with Disney.

http://wdw.wdpromedia.com/media/kana/sd/WDW-Phenylketonuria.pdf




GETTING HEALTH INSURANCE COVERAGE FOR PKU CAN BE VERY DIFFICULT.

Health coverage varies depending on the state that you live in. It's important that you research the coverage benefits allowed in your state. Also, coverage depends on the type of insurance you have.

A state law is needed as under the FDA, these metabolic formula's are not considered a prescription. The insurance company may deem this formula a durable medical equipment and it may undergo review.

Something very important to consider is that if your insurance company is "self insured", it is NOT mandatory to follow state regulations and/or laws related to insurance. You can see the HR manager of your employer, union, etc and ask for a hearing and try to fight for coverage. If you need help with this, please contact us as we have personal experience with this sort of coverage.

For a complete list of state coverage for PKU, please check out the link: http://www.pkunews.org/rights/lobby6.htm




LOW PROTEIN FOOD LIST FOR PKU

The Low Protein Food List for PKU has been an indispensible resource for everyone involved in the treatment of phenylketonuria (PKU) since 1995. This third edition (2010) contains over 6,000 entries, the most extensive listing yet of foods that are potentially suitable for the diet, nearly double the number found in the previous edition. It includes many new foods found at health-oriented grocery stores, expanding choices for the diet.

The book provides information on phenylalanine (phe), protein, and calorie content of foods based on serving portions, both in common measures and gram weights, in an easily searchable format. The handy "mg phe/gm food" column allows users to compare phenylalanine density of foods and make appropriate food choices for individual diet needs. People using an "exchange" system for counting phe will find exchanges are calculated for each food portion as well. The front section of the book also contains valuable information and tips for managing the PKU diet.

Virginia E. Schuett is founder and director of National PKU News, a non-profit organization devoted to providing news and information to people living with or treating PKU since 1989 via a newsletter that is produced three times yearly. A nutritionist, she has been working with PKU-affected families since 1972. She is the author of Low Protein Cookery for PKU, Apples to Zucchini: A Collection of Favorite Low Protein Recipes (with co-author Dorothy Corry), You and PKU, and numerous articles and educational materials related to PKU.

 
 
HAVE YOU SEEN THE LATEST ADVANCEMENT TO THE PKU FOOD LIST? IT'S JUST A CLICK AWAY, LITERALLY. PKU NEWS HAS RECENTLY DEVELOPED AN ONLINE SITE JUST FOR YOU TO HAVE EASIER ACCESS TO YOUR FOOD LIST. THE COST TO THIS ONLINE SUBSCRIPTION IS $48 FOR THE YEAR, HOWEVER THE EASE OF USE IS AMAZING. VISIT http://www.howmuchphe.org/ TO LEARN MORE AND TO SUBSCRIBE.
 


To Help Support the PKU community, please click on the link below.

TOGETHER WE RAISE AWARENESS!!!

All donations to the PKU Helping Hands are tax deductible as allowed by law.


*DISCLAIMER: The information listed on the PKU Helping Hands, Inc. website is for educational and informational use only. This information is not intended, nor should be used as professional advice. In the event that you need to seek medical advice, please contact your clinic.