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Showing posts from April, 2013

Monica Fleegels Fundraising / FDA letter writing / Porphyria Awareness Campaign.

Monica Fleegels Fundraising / FDA letter writing / Porphyria Awareness Campaign.
"Last summer, due to the tireless efforts of the APF , I was able to participate in Phase III clinical trials that gave me relief from the pain of EPP (Erythropoietic Protoporphyria).  For the first time in my life , I spent time in the sun with my family and friends!!  The APF was able to convince the FDA of the importance of continuing the trials and now we need to inform the FDA that they need to approve Scenesse , so all who suffer from EPP can spend time in the sun. Through a letter writing campaign and your donations, we can assist the APF with this major endeavor."     Monica Fleegel
Monica's daughter, Monica, Sister-in-law, Brothers
Monica developed a very creative idea to raise Porphyria Awareness, as well as a means to fund the APF Physician Education program and acquire letters from family and friends to advise the FDA about the importance and need for treatment for EPP.    Monica p…

RareConnect announces 40th online community

RareConnect announces 40th online communityRareConnect.org, the platform created, monitored and run by patient organisations EURORDIS and NORD, continues its mission of bringing rare disease patients together, across borders and beyond language barriers
Paris, 30 April, 2013 –RareConnect.org, a flourishing rare disease online network that brings together thousands of frequently isolated patients, families and patient groups, from across the globe, celebrates the launch of its 40th community. Each of RareConnect’s disease specific communities is monitored, offering a safe place for exchange. Information and comments are translated into five languages, allowing users to communicate with each other despite language differences. This 40th RareConnect community offers those caring for patients with rare undiagnosed brain diseases a place to come together and connect. The community was created in collaboration with several patient support groups including the Wilhelm Foundation,SWAN UK, and…

SCENESSE~ What is it and how does it help Porphyria Patients

SCENESSE® (INN: afamelanotide) is Clinuvel's proprietary first-in-class photoprotective drug. Clinuvel has submitted a marketing authorisation application (MAA) for SCENESSE® to the European Medicines Agency for the orphan diseaseerythropoietic protoporphyria (EPP). Further studies of SCENESSE® are underway as a repigmentary agent in vitiligo and as a photoprotective for organ transplant recipient (OTR) patients. SCENESSE® (pronounced "sen-esse") acts by increasing the levels of melanin in the skin; and shields against UV radiation (UVR) and sunlight. SCENESSE® is delivered via a subcutaneous dissolving implant approximately the size of a grain of rice. Increased pigmentation of the skin appears after two days and lasts up to two months.Alpha-Melanocyte Stimulating Hormone (α-MSH) is a naturally occurring peptide hormone which is released by skin cells in response to the stimulation by ultraviolet radiation (UVR). α-MSH has a very short half life (seconds) in the blood …

Student Educates Classmates during National Porphyria Awareness Week

Thank you to all who participated in the National Porphyria Awareness week.
We would like to sincerely thank everyone that was involved in last weeks National Porphyria Awareness activities.  
The following is an example of one of the Campaigns one of our young EPP members Alessia Callahan does every year for Porphyria Awareness Week. We are so very proud of her.

Student Educates Classmates during National Porphyria Awareness Week
Thomas E. Bowe student Alessia Callahan speaks to her fifth-grade class about Erythropoietic Protoporphyria during National Porphyria Awareness week.GLASSBORO - Alessia Callahan faces challenges that other 11-year olds don't even have to think about. While those challenges make her unique, her courage in facing them makes her extraordinary.  Read the full article here.
Stay tuned. We will be sharing more Porphyria Awareness campaign experiences with you in the near future.
Remember....Research is the key to your cure!

Sign UP its free, Lifesaving. Porphyria Invite.

I wanted to take a few moments to suggest signing up for these groups.  These groups are designed for you at no cost.  
When you sign up for the http://rarediseasesnetwork.epi.usf.edu/porphyrias/index.htm you are signing up to participate in research projects answering questions about your type of Porphyria, you have questions, your chance to support these programs for possible medications and cures are so necessary.  These are great Expert Doctors that are interested in learning about you and your family.  Sometimes it’s a simple process of answering questions, a phone call, a trial drug, or a blood  & urine sample!  So please sign up and explore this site.
Next we have the http://porphyriafoundation.blogspot.com.  This is supported by the American Porphyria Foundation.  It is also free to join.  Learn  about upcoming events, read members stories, be encouraged that you are not alone.  Try a recipe, learn some tips from the Experts.  Be INVOLVED!
Do you enjoy interacting with other …

Read Kelly Story & PCT

Kelly Story Type of Porphyria:  Porphyria Cutanea Tarda (PCT)
My name is Kelly Story and I live with my husband, Chad, and two cats in Kissimmee, FL. In July of 1999, one month after our wedding, I was out of town on business, and I noticed tiny little water blisters all over my hands. The blisters didn't itch and were not painful. Although I found them to be very odd, I didn't worry much. Over a short period of time, my skin became extremely fragile. It seemed like almost anything would cause a scrape on the skin of my hands. Plus, the blisters got much worse. My hands looked like something out of a horror movie. I was so embarrassed all of the time, and I cried a lot. I went to a dermatologist. After two visits, he told me that he was fairly certain that I had PCT but suggested that I go to a specialist. After several humbling tests and weeks of waiting, I was officially diagnosed with PCT. The doctor said that I would have to start phlebotomies. This meant that over a pint…

What Real Happiness Is All About? How Do We Get It?

“When you SEEK HAPPINESS for yourself, it will always elude you. When you seek happiness for OTHERS, you will find it  yourself.” ~ Wayne Dyer What is it that motivates you in life? What are the things you THINK are making you happy, and what are the things that really make you happy?
Are you able to observe yourself from time to time and see whether the things you chase after are really the things you want for yourself? I think that most of us, want to want more than they want to have, because when they receive that which they were after, they go on to the next thing, and the next thing, and this is how most of us spend our lives, running after something that we think it is outside ourselves, believing that our happiness lies in things, in other people, in different places, etc., and we rarely or never, stop to observe ourselves and our behavior, we rarely or never stop to think whether we are sane or insane for doing so. It is never too late to return to yourself, never. I challenge …

Please take a moment to donate and raise awareness for The American Porphyria Foundation

AMERICAN PORPHYRIA FOUNDATION~ if you are looking to still place an order with 100% of all orders going to the APF please let me know. All orders are on their way to those that have purchased things. Things that are available are the 16 gig usb drive, bag's and totes and wristbands in navy, red, purple light blue, scarfs beautiful most all colors, and traveling cups. So please email me with any questions or to reserve items @ porphyriaorders@gmail.comLike · · Promote · Share
Amy L Chapman View all items: https://www.facebook.com/groups/APF.AIP.HCP.VP/photos/

Remember~ Research is your key to a cure!
Please take a moment to donate and raise awareness for The American Porphyria Foundation

"Get Informed. Get Involved. Help FDA Help Patients Have a Bigger Voice.

FDA opens new line of communication with patients...


"Get Informed. Get Involved. Help FDA Help Patients Have a Bigger Voice.  That's the slogan of a new FDA web site. The FDA Patient Network has been designed from the ground up to focus entirely on patients.
The FDA Patient Network web site is an interactive tool for educating patients, patient advocates, and consumers on how their medications - both prescription and over-the-counter -and medical devices move from the realm of idea to the realm of the marketplace. It brings together, in one place, information that is important to patients, making it easier for them to find what they are looking for and to understand the significance of their findings.
This web site will open new channels of communication with the public, such as live chats with senior agency officials. It will help patients and consumers better understand the process for determining whether medical products are safe and effective and encourage them to contribut…

How To Make The Perfect Salad

How To Make The Perfect SaladAPR 9, 2013 BY RECIPE REHABWhether you’re a vegetarian, foodie, health-conscious mom, busy professional, or anything in between, there is a colorful, delicious salad just for you. If you haven’t found that perfect salad that you just love, you’re in the right place, because we are here to help you with our completely custom, foolproof salad how-to. Just pick what you like, pile on the nutritious ingredients, and enjoy a hearty, healthy, homemade salad…

Healthy Hint: Make your own DIY salad dressing and cut hundreds of calories out of your meal. Our Creamy Dill Ranch is just 19 calories and our Tomato-Herb Dressing is just 20 calories. We also love these Spring-fresh dressings: Fresh Strawberry Dressing for 26 calories and our 62-calorie Lemon-Mint Vinaigrette.
Get Inspired
Now that you are armed with all the elements to create salad perfection, you’ll need a little inspiration, no? Here are some of our favorite salads…• The Busy Lady – For the woman on-the-g…

Learning about Porphyria, types, treatment, testing the APF partners with the NIH

Learning about PorphyriaWhat is porphyria?What are the signs and symptoms of porphyria?How is porphyria diagnosed?How is porphyria treated?What do we know about porphyria and heredity?What triggers a porphyria attack?How is porphyria classified?What are the cutaneous porphyrias?What are the acute poyphyrias?NHGRI Clinical Research in PorphyriaAdditional Resources for PorphyriaOnline Resources for Specific Porphyrias
What is porphyria? The porphyrias are a group of different diseases, each caused by a specific abnormality in the heme production process. Heme is a chemical compound that contains iron and gives blood its red color. The essential functions of heme depend on its ability to bind oxygen. Heme is incorporated into hemoglobin, a protein that enables red blood cells to carry oxygen from the lungs to all parts of the body. Heme also plays a role in the liver where it assists in breaking down chemicals (including some drugs and hormones) so that they are easily removed from the …