Rare Disease Awareness Network

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

Welcome!
Welcome to our very first edition of the Rare Disease Awareness Networks newsletter. We are so excited to get this started! 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 plan to include some things that will be interesting to all of our readers and to every member of our community! We hope you will find this to be a useful tool and a valuable resource. If you have thoughts, suggestions, and ideasplease feel free to share them! Your input will help make this the best newsletter ever and we truly look forward to hearing from you! 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

The story of our logo
A while back when we were first kicking around the idea of creating a nonprofit organization, I started to think of names for the organization. Honestly and truly, the very first name I thought of was the one that stuck: Rare Disease Awareness Network. Well, we needed a logoone that screamed Rare Disease and one that was different than all the others, a logo that would set us apart from all of the other nonprofits around. So I tossed the idea out to my daughter, Sadie, who is only 13 years old. She took the idea and ran with it! Again, much like the name of the organization, this was the first idea she came up with and it stuck!! There is significance to each and every part of it. The zebra print is symbolic of the Rare Disease awareness color; much like pink is the breast cancer color. Red is for the day I spoke at the State House in Boston for the Devics Disease bill. A friend suggested I wear red because it is a power color. Well that grew and grew until my entire elementary school was wearing red to show their support as well as our entire Facebook community. So red had to be in there somewhere! The r is lowercase because the numbers of people with one type of rare disease is small, yet the number of people with diseases in general is quite large. Hence the D is uppercase. And there you have itthe hows and whys behind the logo. It certainly sets us apart from the rest and holds significance at the same time! Thanks so much, Sadie! Great job!!!

Crunching the Numbers

In the United States, a disease is RARE when there are less than 200,000 diagnosed patients. (The numbers are different in other countries. It depends on how large or small the population is.) There are about 6,800 known RARE Diseases. (There are many other RARE diseases without names at this date in time.) Only 250 RARE diseases have FDA approved medical treatments. 30 Million Americans have been diagnosed with a RARE disease. 1 out of every 10 Americans has a RARE disease.

Spotlight on Devics Disease

a/k/a Neuromyelitis Optica (NMO)

By Rebecca Becka Alves

Devics Disease:
1. 2.

Also called NMO Less than 2000 patients Symptoms include paralysis and vision loss No known treatments or cure

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Each month we plan on putting a Rare Disease in the spotlight. For our very first issue of our newsletter, we are focusing on the disease that started it allDevics Disease. Devics Disease is an autoimmune illness that affects the optic nerves and the spine. The amount of patients who suffer from Devics varies greatly depending on which source you quote. The Mayo Clinic, which has a registry of sorts due to their development of the one and only titer, says that the number of patients is between 800-900. Other sources say there is 1000 and others still say there are no more than 2000 patients. No matter which source you use, however, the number is tiny! It is considered difficult to diagnose because many of the symptoms are similar to other illnesses such as Multiple Sclerosis and Lupus. Those symptoms include numbness and paralysis of limbs, loss of vision, shut down of the bladder and bowels, hiccups, and vomiting. There are many other symptoms as well. It all depends on how, and which nerves are affected at the time of an attack. Right now, there are no known treatments or cures for Devics Disease that have been approved by the FDA. However, attacks are often treated with steroids such as Prednisone and other medicines are used to help prevent attacks. Because these medicines havent been specifically tested for use with Devics Disease, they are considered off-label uses. Some of these treatments include IVIG and Rituximab. Off-label uses of medications are often denied by health insurance companies. This leaves many Devics patients fighting for treatment and therefore fighting for their lives. Devics Disease happens to be the illness I have lived with for the last 18 years. It started when I was 21 with an attack that left me paralyzed and hospitalized. I had many, many an attack after that and the quality of my life wasnt so great. I lived in fear every single day of when and where my next attack would strike. I couldnt leave my house without carrying a bottle of Prednisone. Sometimes, I couldnt leave my house at all. Finally, after years and years of unsuccessful medications, my doctor suggested IVIG. This has been a miracle for me. I have been able to be a mom and a wife, and not just a patient. I have been able to live my life rather than watch it pass me by. However, I am fighting for coverage with my insurance company because they do not want to pay for an off-label use of my medicine. I just have to convince them that this is a miracle worth paying for. Fingers crossed that they will come around! I will keep you updated as we progress through the appeals process in May. There are so many more stories just like mine for patients who suffer from Rare Diseases. Lets work together to ensure that patients do not have to fight insurance companies while they fight for their lives. Thanks so much for your support!!

Our thanks for participating in Rare Disease day go out to: Stephen & Co Munchkin Mania Rochelles Collective Souls Bear-ly Used Consignments Happily Ever After Cakes Margarets Boutique Wicked Kickin Cheesecakes Finders Keepers Village Toy Shop All Security III Suns Desert Sun Dunkin Donuts JB Photography Miss Z Photography Keiths Auto Repair

Snapshots
Here are a few of the pictures of the events and happenings at Rare Disease Awareness Network! We have had such a great time. First we celebrated Rare Disease Day in February and then we participated in a health fair in March. We wish we could post the pictures of all the places that participated in RDD and of all the people who stopped by our table at the health fair. Thanks to you all!!

Contact Information:
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 forward the newsletter to your friends and family. Thanks a bunch!!

Rare Disease Awareness Network PO Box 30061 Acushnet, MA 02743