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Showing posts from July, 2015

7 Strategies to Developing a Positive Mental Attitude

7 Strategies to Developing a Positive Mental Attitude
One of the best ways to increase your chance of success in all areas of life is to develop a positive mental attitude.Taking a positive attitude toward life makes you a happier person all round, and one that other people in your life look up to, and want to spend time with.There’s even evidence that having a positive attitude can help lower stress levels and improve your health.Maintaining a Positive Mental AttitudeHere are 7 ways that we can all work toward developing a positive outlook on life.1. Focus On the Present
Mark Twain said,I’ve been through terrible things in my life, some of which actually happened.He was pointing out the fact that we often add to our problems by building them up in our minds to be bigger than they really are.How often do you find that things you worry about for days end up not happening at all, or not being as big a problem as you thought?But, by focusing on the present as much as possible, you can min…

Alnylam and Collaborators Publish Pre-Clinical Results with ALN-AS1, an RNAi Therapeutic Targeting Aminolevulinic Acid Synthase-1 (ALAS-1) for the Treatment of Hepatic Porphyrias, in the Proceedings of the National Academy of Sciences

We need research volunteers, if you have an Acute Porphyria and would like more information on this and other studies please contact Natalia APF 1-866-APF-3635
Alnylam and Collaborators Publish Pre-Clinical Results with ALN-AS1, an RNAi Therapeutic Targeting Aminolevulinic Acid Synthase-1 (ALAS-1) for the Treatment of Hepatic Porphyrias, in the Proceedings of the National Academy of Sciences 05.21.2014- New Paper Documents Previously Presented Proof-of-Concept Results in Mouse Model of Acute Intermittent Porphyria (AIP) -- RNAi Therapeutics Targeting ALAS-1 Completely Block Production of Toxic Heme Biosynthesis Intermediates that Cause Symptoms and Disease Pathology -CAMBRIDGE, Mass.--(BUSINESS WIRE)-- Alnylam Pharmaceuticals, Inc. (Nasdaq: ALNY), a leading RNAi therapeutics company, announced today the publication in the Proceedings of the National Academy of Sciences (PNAS) of pre-clinical results with RNAi therapeutics targeting aminolevulinic acid synthase-1 (ALAS-1) for the treat…

Thank you each and every member of the APF. We could not do it without YOU!

Thank you each and every member of the APF.  We could not do it without YOU!

Look at all the research projects, advancements toward new medications, and people living long healthier lives.  Thank you for getting the word out to your Doctors, RN's, Family and Friends.
To the hospitals, ED's, Dr. offices with your Patient packets, Doctors receiving the Dr Kits and ER Kits.  We need you to continue speaking up about Porphyria how are you affected daily by it.
Look at all the media attention all around the world- keep speaking up and out loud!
Take a minute and ask yourself where did I get this information from, have I myself read it and educate myself and loved ones to.  I enjoy receiving gifts "golden nuggets" of information from the APF.  
I make sure that I once a year or more, I make sure that my membership is current to continue to receive these gifts & my donations are tax deductible.  So will you help encourage your family, friends by donating your time, efforts, …

THE "MOVE IT IN THE MOONLIGHT RUN" In Bulngton, NC August 28, 2015

THE "MOVE IT IN THE MOONLIGHT RUN" In Bulngton, NC August 28, 2015Shawn Willis is a dynamo in everything he undertakes. He is the owner of the Chick-Fil-A stores in Burlington, NC.  On August 28, Shawn hosts the MOVE IT Moonlight Run from for porphyria awareness to help fund the APF educational programs. Please follow the event details and join the run:http://cfaraceseries.com/races/161/


"Remember....Research is the key to your cure!"

Information on FB Australia Site: www.porphyria-australia.org/

If you are trying to locate a good Doctor in Australia or the Australian Porphyria Group Please note this information below.  On FB you can contact with Jennifer Bellerridge and visit: http://www.porphyria-australia.org/

For Testing Locations see below:


NSW ~ Victoria ~ South Australia ~ Western AustraliaNSW Dr Victor Poulos and A/Prof Peter Stewart
NSW Porphyria Reference Unit
Biochemistry Department,
ROYAL PRINCE ALFRED HOSPTAL
Missenden Rd
Camperdown NSW Australia 2050 Phone: (61-2) 9515 8572
Fax: (61-2) 9515 7931
Email: victor.poulos@sswahs.nsw.gov.au
Website: http://www.sswahs.nsw.gov.au/SSWPS/ToDelete/RPAH/Porphyria/
VICTORIA Porphyrin Reference Laboratory,
Biochemistry Department,
ROYAL MELBOURNE HOSPTAL,
Cnr Grattan Street and Royal Parade,
Parkville, 3050. Phone: (61-3) 9342 7641This is the only recognised porphyria testing laboratory in Victoria.Samples can be collected and forwarded by commercial laboratories provided they follow the recommendations.
SOUTH AUSTRALIA John Zoanetti
Senior Med…
                                                         WELCOME all new members!

 Were so happy to have you all here. 
The APF has been very busy with research studies and we encourage you to please contact the APF about getting registered, if we want a cure we need YOU! Ask for Natalia Apf, Jessica Apf @ 1-866-APF-3635
If you would like to join the Purple Light Blog it is complimentary to join.  Learn how to handle stree and anxiety while you are sick.  How to have a great Doctors visit, being prepared to diet and exercise.  So join today at this link:  https://www.blogger.com
Have a wonderful summer weekend everyone!

Your APF Membership & Support the APF with AmazonSmile for Charitable Organizations!

Your APF MembershipWe are currently working on the 4th quarter Newsletter, where you can find latest news, updates and stories from the porphyria world. Our members, who made deductible charitable contributions, will receive the fresh issue.The APF is able to maintain our physician and patient education programs and many other services because of your support. Since we do not receive government funding, we need your support and donations. Is your membership and contact information up to date? If you have moved, please update us with your current address. Be sure to send us your email address so you can receive the E-news.
Support the APF with AmazonSmile for Charitable Organizations!You can also support the APF through the AmazonSmile program! Amazon will donate 0.5-0.8% of the price of your eligible purchases to us, at no cost to you. Please make us your choice of a charitable organization, support the research while shopping!Please note, the program will only be available to shoppers…

Important Post *** Tests for Porphyria Diagnosis***

Tests for Porphyria diagnosis The porphyrin precursors ALA and PBG and porphyrins are readily measured in urine. Normal urine contains appreciable amounts of these substances, and different individuals may have widely different levels. It must also be remembered that "normal ranges" do not necessarily include all normal people. Therefore, small increases, especially in porphyrins, are not always significant. ALA is an amino acid, and PBG is a pyrrole. Both are colorless, but when present in large amounts in a solution such as urine, PBG can spontaneously form uroporphyrin, which is reddish, and other products that are brownish. The Mauzerall-Granick method and variations of that method are preferred for measuring ALA and PBG and have been available for many years. The test involves first separating ALA and PBG from each other and from interfering substances in urine, and converting ALA to a pyrrole. Ehrlich's reagent, which reacts with pyrroles (and some other chemicals…