Rare Disease Awareness Network

Together We Can
MAY 27, 2012 VOLUME 2, NUMBER 1

Welcome!
Welcome to our second edition of the Rare Disease Awareness Networks newsletter. Our first edition was a HUGE success and we thank all of you for making it possible!! This will be a place for us to swap stories and share information about Rare Diseases. Although, you do not need to have a Rare Disease to find this of interest. We hope you will find this to be a useful tool and a valuable resource. Thanks so much for signing up to receive this correspondence. We hope that you will enjoy what you read and will like it so much you will be on the lookout for next months edition! Happy reading!!! Our mission is to provide awareness, advocacy, and education regarding all aspects of Rare Diseases.

Behind the Scenes

We are almost official!! We are so close to becoming a real nonprofit organizationall we are awaiting is the approval from the licensing agencies. Woo Hoo!! In accordance with the policies and guidelines, we need to have bylaws and a Board of Directors. Well, honestly, we thought that printing the bylaws would be far too boring to read, so we opted to introduce you to the Board of Directors instead. Each person was chosen for their strengths and talentsof which they have many! There were so many people that truly would fit well in these roles that it was difficult to narrow it down. And now, without further ado please meet the Board: Rebecca Alves President and Founder Jennifer DaCosta Treasurer Jennifer Bolarinho Director Liz Costa - Director We have a few invitations still outstanding and if they commit to serving on the Board, they will be introduced next month!! Susan Green Vice President Jamie Alves Secretary Patricia McArdle, Esq. Legal Director

Meet Our Board of Directors

WHY ZEBRA?
Zebra print is the Rare Disease Awareness color much like pink is the breast cancer color. In medical school, students are taught to diagnose patients based on the condition that is most likely. This idea goes along with the saying: "When you hear hoof beats, think horses, not zebras." The horses are the likely explanation, and the zebras are less likely. A medical zebra, then, is a person with a rare medical condition, which is often called an orphan disease.

Spotlight on MAGIC Syndrome

(Behcets and Polychondritis)

By Jennifer DaCosta

MAGIC Syndrome:
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Combo of Behcets and Polychondritis Only recognized as an illness since 1995 Symptoms include sores, chronic pain, aneurysms It is an autoimmune disease

The strength of someone with a rare disease is more than anyone can imagine! My cousin Dawn (who was more like a sister to me) lived her life with a Rare Disease called MAGIC (Mouth And Genital ulcers with Inflamed Cartilage) Syndrome. I can only speak of my memories as a child and what I have been told because she was just a year older than me. One of my fondest memories was when we were about 6 years old. I remember sitting in the bathtub for hours. My aunt would roll the television into the bathroom and we would watch Saturday Morning cartoons! I now know the reason for that was to relieve Dawns pain from the genital sores. So while I thought we were just playing, this was really the beginning of many things we would do together in her road to comfort. Dawn had symptoms for years before she ever got a diagnosis. Doctors treated her for Polychondritis (mouth and genital sores) and Behcets Syndrome (arthritis, joint pain, collapsed nose cartilage, and aneurysms) which are also both Rare Diseases, even though they didnt want to label her as such because she was too young to have those illnesses. MAGIC Syndrome was not named such until 1995. By this time, she had already been on very high doses of prednisone and many other medications for years. When Dawn was 19, my uncle and I drove to Pennsylvania to pick her up from college because she had broken several vertebrae just walking down her dorm hallway. Two years later, she had open heart surgery because of an aortic aneurism caused by weakened vessels in her heart. She went into cardiac arrest and was dead for several minutes but fought through; only to find out she was paralyzed from the waist down at 21 years old. She endured months of rehab at Spalding in Boston and a semester of several visits a week from me and our family to encourage her to walk again. All her hard work was too much on her body because of weakened bones that would eventually not withstand her walkingnot even with braces. At the age of 34, Dawn lost her battle with MAGIC Syndrome. It has been four years since she passed away. Even though I miss her every day, I know she fought hard and was very tired and in so much pain in the end. I am thankful for our time together. I cherish my memories and will forever learn from her example. I will continue her fight in her honor, to raise awareness for others who suffer from Rare Diseases as well. I pledge to continue to bring strength, hope, and courage - as she shared with me - to others who may need it! I am asking for others to please join me as I spread awareness for those with Rare Diseases. Hopefully, one day, everyone will have the medical care they need and no one will have to lose someone they love.

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RDAN Spread the Word Flat RDAN T-Shirt Tool Kits Include:

Flat RDAN
We are working on a campaign to help spread the word and increase awareness about the cause of Rare Diseases and to introduce our organization. If you are familiar with the childrens story, Flat Stanley, then you have an idea what we are doing. We are mailing out T-shirts to friends, relatives, and acquaintances across the globe. We are asking that when you receive the T-shirt, you wear it to someplace well-known to your community and take your picture in front of the welcome sign. Post the picture on our facebook page at www.facebook.com/SaveBecka or email it to us at savebecka@comcast.net. Then wash it and send it to a friend who will do the same thing and will keep the cycle going. It will be so exciting to keep track of the places our Flat RDAN has been and see just how many places we can spread the word!

1. One Rare Disease Awareness Network TShirt 2. Laminated Instruction Card (stays with the kit) 3. Laminated Newsletter (stays in the kit) 4. Information Sheets (take one and pass the others with the kit)

A Very Generous Gift

The Acushnet Police Association has presented us with a very large donation to help start up our nonprofit organization! The gift took me by surprise and brought me to tears. I am so fortunate to have such a supportive community and such great friends!! Mere words cannot even begin to express the extent of my gratitude. It just goes to show that you can always count on the men and women in blue! Thank you for supporting the Rare Disease community. Thank you, thank you, THANK YOU!!!

Contact Information:
Rare Disease Awareness Network PO Box 30061 Acushnet, MA 02743 Please feel free to contact us at any time. Send us an email at savebecka@comcast.net. Also, we can be reached through the mail at Rare Disease Awareness Network PO Box 30061 Acushnet, Massachusetts 02743

Facebook:
Come join our facebook family!! Like us at www.facebook.com/SaveBecka.

Thank You!!
We cannot thank you enough for your support!! We hope you have enjoyed a few moments with us and hope you will be back for more next month! Please feel free to share this newsletter with friends and family. Thanks a bunch!!