Rare Disease Awareness Network

Together We Can
OCTOBER 15, 2012 VOLUME 7, NUMBER 1

Welcome!
Welcome to our seventh edition of Rare Disease Awareness Networks newsletter. We have some very exciting news to share!! The IRS approved our application to become a tax-exempt non-profit!! WOOO HOOO! It is official: We are a 501 (c) 3! This status will open up the doors for so many wonderful opportunities and will really allow us to grow. I couldn't be more proud of us all! Be on the lookout for some exciting new awareness events! 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.

New Partnership
Calling All Cooks!
People are constantly asking how they can help. They are seeking out ways to provide support and comfort to those who may be chronically ill. One of the best things that you can do is provide a home-cooked meal for those who feel under the weather. Oftentimes, patients with Rare Diseases spend a lot of time at a doctor's appointment and have to travel great distances to see their specialists. When they get home, the last thing they feel like doing is cooking. I am very excited to announce that RDAN has teamed up with Kitchen Dreaming to judge a contest for us! We are asking readers to submit their favorite casserole recipe. Judging criteria will be ease, taste, "freeze-ability," and "reheat-ability." It will then be tested and tried by the staff of Kitchen Dreaming and a monthly winner will be announced. The winning recipe will be printed in the newsletter each month! We hope to compile a recipe a month for the next year and maybe we could make a fundraising booklet with them! Please send in your favorite casserole recipe to Rare Disease Awareness Network, PO Box 30061, Acushnet, MA 02743 or email them to savebecka@comcast.net. In order for it to be considered for the contest, they should be submitted by the 10th of every month. There is no better way to help out someone who is sick, or grieving, or a new mom, or elderly than filling their freezer with homemade goodness! Check out our first recipe, Easy Chicken Noodle Casserole, provided by Kitchen Dreaming, on the last page of the newsletter! I know what I am having for dinner this week! YUM!

To learn more about Kitchen Dreaming and their award winning southern chefs, please like them on Facebookif you haven't already!

October Awareness
The month of October is a busy one for raising awareness. We would like to draw your attention to a few illnesses that are honored this month: Breast Cancer Physical Therapy Respiratory Health SIDS Mental Illness Week World Psoriasis Day Down Syndrome Stuttering Awareness Day Bone and Joint Health Week

Spotlight on Opsoclonus Myoclonus Ataxia Syndrome (OMS)

Written by Kim Leblanc Do you remember what it felt like to watch your child learn to walk and talk? I do three times. My son Anthony has a rare disease called Opsoclonus Myoclonus Ataxia Syndrome or OMS. This is a neurological disease that affects individuals in different ways. When Anthony gets sick, he can lose his ability to walk and talk. His eyes free roam around in his sockets and he looks like he just got off of the Twist-a-Whirl at the State Fair. OMS is usually triggered by some neuroblastoma in more than 59% of the people affected. An OMS attack can also be brought on by vaccinations, viruses or the common cold. Sending him to school or going grocery shopping is a scary thing to do. Anthony was around 15 months old when he started to walk. After about three weeks, I noticed his left foot turning in and that his left arm was weaker than his right. We went to the pediatrician and they sent us to Hasbro Childrens Hospital. He was admitted and they questioned a stroke or neuroblastoma. Luckily, neither of those diagnoses were true. He was released with a diagnosis of Ataxia Syndrome after an illness and sent on our way. I knew something wasnt right. I pursued different doctors, but by then he had started talking and walking again so it was difficult to see the problem. On March 26, 2007, Anthony got his vaccination for chicken pox and it all started again. By April, he could not talk or walk correctly and his eyes were roaming around his sockets in independent circular motions. We went back to the pediatrician who contacted a neurologist, and within days we were in for sedated MRIs and spinal taps. That week I learned that my little boy had a rare disease called OMS and that there was no cure. The doctor spoke with me for over an hour, but honestly, I barely remember a word he said after the words "No cure" were spoken. He gave me a six-page document that I read while crying at home. When your child is diagnosed with a rare disease, you feel all alone. Thankfully, I found a website for information and a Yahoo group of parents with OMS children. With the help of these parents, and my family, we made it through. Anthony has been able to hold off his attacks by getting intravenous treatments (IVIG) monthly. We stay home a lot because any illness that causes his immune system to work can cause his OMS to activate. Recently, Anthony has been given the all clear meaning that he is considered in a remission pattern and we are weaning him off of IVIG. This past September, he entered first grade and thankfully his disease has not affected his academics. Most children with OMS end up with mild to severe behavioral and intellectual disabilities, so we are grateful that he got a quick diagnosis. The big problem with OMS is that the chance of having an OMS patient is so rare - one in ten million - that people get misdiagnosed and it takes a long time for treatment to begin. They say time heals all wounds, not so in the case of OMS. Time is brain trauma, and that is something we dont want to wait for.

Kim stated that OMS is usually caused by a neuroblastoma. It is a cancerous tumor that is usually diagnosed in young children under the age of five. It affects slightly more boys than girls. A neuroblastoma starts in the nervous system.

RDAN Dinners
Easy Chicken Noodle Casserole
Ingredients: 4 slices of bread, toasted 2 cups shredded rotisserie chicken or 2 poached chicken breasts, shredded 1 cup white wine 1 tablespoon olive oil 4 tablespoons butter, divided 1 medium onion, sliced thinly 16 oz. small button or baby bella mushrooms, thinly sliced Salt and pepper 2 tablespoons all-purpose flour 1 1/2 cups chicken stock 1/2 cup heavy cream or half-and-half 1 cup frozen peas and carrots 1 pound egg noodles, cooked Chopped fresh Italian parsley leaves, to garnish Directions: Heat a large skillet over medium heat. Add oil and 2 tablespoons butter (reserving the remaining 2 tablespoons butter). Add onions and mushrooms and season with salt and pepper. Saut over medium heat for 5 minutes until the onions are opaque. Sprinkle in the flour and cook flour 1 minute, stirring with a whisk. Then whisk in stock and cream. Adjust seasonings of salt and pepper. Add peas and carrots. Add rotisserie or poached chicken, cooked noodles to the sauce and cook 2 to 3 minutes to warm the chicken through. Remove from the heat and transfer mixture to a 9" x 13" casserole or other large serving dish. Grate toasted bread into large crumbs using a box grater or by pulsing in the food processor. Melt remaining 2 tablespoons butter in a small cup in microwave and pour melted butter over bread. Scatter the bread crumbs and parsley over the top of the casserole and serve immediately. This dish is best served immediately but is also able to be reheated in the microwave. Should you want to reheat it in the oven, cover it with tin foil to trap in the moisture so it does not dry out. Bake it at 350 F for 20 or 25 minutes or until heated through. It is also able to be frozen in a freezer-safe casserole dish and reheated in the oven or microwave after thawing. Also, if you are taking this dish to a potluck, leave the bread crumbs off until immediately before serving so they stay crisp.

RDAN Board: Rebecca Alves, President Susan Green, VP Jamie Alves, Secretary Jennifer DaCosta, Treasurer Patricia McArdle Esq., Director Dawn Barksdale RN, Director Rosemary Arruda, Director Liz Costa, Director Jennifer Bolarinho, Director

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! Thanks a bunch!!