By: Sue Anganes
February 29, 2008, a “rare day” because it was a leap year, was the first Rare Disease Day in Europe. For the first time patient groups from different countries representing a variety of diseases collaborated on a large-scale awareness-raising campaign in favor of rare diseases. The success of that day gave way to a yearly event on the last day of February with the aim of becoming a world awareness day. The 10th annual World RARE Disease Day will be held on Tuesday, February 28, 2017! On this day, various activities take place all over the United States as well as countless locations around the world.
Rare Disease Day is something my family participates in because we are battling one of the 7,000 known rare diseases. My two youngest sons are affected by a very rare neurometabolic disease – a neurotransmitter disorder. There are only one in one million persons affected with this disease. Often those with rare diseases wait many years for a diagnosis. In our case, it was ten years before we had any idea what was wrong. In 2013, my boys were accepted into the Undiagnosed Diseases Program at the Nation Institutes of Health in Bethesda, MD. The NIH is our government’s research hospital and employs the world’s top researchers in medicine. We spent one week at the NIH undergoing tests, and then returned a month later for a trial of medicine. Three and a half years later, we are still experimenting with various medications.
This last day in February, we will once again participate in Rare Disease Day. It will mostly be a day to think about where we started in our medical journey, where we are now, thankfulness that we live in the greatest country and have the best hospitals and researchers right here, and hopefulness in obtaining a treatment or cure sometime in the future.
To learn more about Rare Disease Day and find out how you can participate, visit the links below:
By: Susan Turk
My daughter has a Valentine’s Day party at school this year and it’s one of those where every child gives everyone else in the class a Valentine. It’s sweet and inclusive making sure that nobody’s feelings get hurt, but buying those cards can be difficult if you’ve waited until the last minute like me and the good ones at the corner drugstore are sold out and the snowstorm outside is keeping you from going anywhere else.
So this year we decided to make our cards out of stuff we already had and added bonus it gave us something to do while we were stuck inside with the snow.
– Colored paper
– Glue stick
– Laffy Taffy Rope (any kind of long candy will also work)
1. Fold paper in half and cut out a three large hearts. This will ensure that all of the hearts are about the same size and shape. (Don’t let young children use scissors)
2. Glue two of the hearts together with the top of a Laffy Taffy Rope between them. This will be the arrowhead.
3. Fold four hearts in half vertically. Glue two of the folded hearts together. Do the same with the remaining two hearts. Then glue the two pairs of feather hearts together with the bottom of the Laffy Taffy Rope in the middle. This will serve as the feathers.
4. Repeat as many times as necessary for the kids in the class and decorate as you want. (We just wrote names on ours)
By: Amy Dienta
– 1 box of Fettuccine noodles
– 1 tablespoon butter
– 1 teaspooon flour
– 1/2 teaspoon minced garlic
– 1 cup fat free Milk
– 2 tablespoons low fat cream cheese
– 1/2 cup Parmesan cheese
– Salt and pepper
1. Cook Fettuccine
2. In a different pan set to low, add butter and melt it
3. Add garlic and flour to the pan
4. Mix with a wooden spoon for 1 min (be careful not to burn butter)
5. Add milk and cream cheese to the pan and combine using a wisk
6. Cook until it just starts to boil
7. Add in Parmesan cheese
8. Toss pasta into sauce and eat!
This is excellent with broccoli and cooked chicken, as well!
By: Amy Dienta
Trying to get kid to do things out of their comfort zone and still make them comfortable doing it is such a hard task. Sometimes you have to let the child lead.
My son Omar has autism; and over Christmas, he wanted to see Santa, but he couldn’t do it. He chickened out each time.
On Christmas Eve, he woke me up at 5am saying he had to see Santa. He had to do it. So we got to the mall as soon as it opened. As we walked toward Santa, he kept asking me to pick him up.
We were on the second floor of the mall and he could see Santa interact with kids. He watched this for 30 minutes and then determined we could continue on.
As we got closer, he told me, “Mommy, I’m just going to watch the other kids, I’m scared.”
Finally, he decided we could wait in line. Finally, he saw Santa!
So to all parents out there, have patience with your children and they will figure out some things on their own. He needed time to stop and watch and watch closer. But he did it! He saw Santa!
By: Amy Koehler
I made a resolution to have more healthy home-cooked meals this year. I’m not even a full week into the New Year and I already remember why we didn’t have them much before. Between taking care of Jenny (3) and Nate (5) and working full time, it’s a daunting task to also have dinner on the table.
Thank goodness for my slow cooker! It lets me fix it and forget it until it’s time to eat.
Here is one of my favorite weekday slow cooker recipes:
Spicy Chicken and Quinoa
(spicy is really a misnomer here because I tone mine down so much for the kids)
– 2¼ cups water
– 1 cup quinoa
– 8 oz reduced fat cream cheese
– 2 bell peppers, cut into bite sized pieces
– 2-4 chicken breasts (cut in half if they’re big)
– 1 jar (16 oz) salsa, heat level of choice (I use mild for the kids)
– 1/2 cup jalapeños (optional)
– 1 can black beans, drained and rinsed
1. Pour water into a slow cooker. Add quinoa.
2. Add cream cheese, bell peppers, jalapeños and chicken breasts to the slow cooker. Pour the jar of salsa over the chicken.
3. Set the slow cooker to low and let cook on low for 6 hours.
4. Add the can of black beans and let it continue to cook on low for another 2 hours.
5. Serve and enjoy!
By: Sue Anganes
This year, Christmas feels a little different to me. Maybe it’s just because I’m getting older, or maybe it’s just life’s circumstances, but it somehow feels different.
When asked what I would like for Christmas, I couldn’t think of one thing to put on a list. Not one. I feel as if I have everything that money could buy. My joy is in what I already have, my husband, children, and my grandchildren. The things I wish for cannot be purchased from a store or on Amazon. So much in the world is spinning around us and out of our control. It often is very upsetting to me.
If I could add things to my wish list, these are the things I would ask for this year: the division in our country reconciled, a cure or treatment for my two youngest sons’ neurotransmitter disease, comfort for my friends who have lost loved ones this year, peace in this broken world, refuge for the refugees, and love to prevail above all other things.
Some of these things can start right within my own family. I will be striving this Christmas, and throughout the New Year, to have love prevailing in my home and with my friends and family. Hopefully, that will make a positive difference in my little space in this world.
I wish all the readers a very Merry Christmas and Hanukkah. Peace and Blessings be on your families.
By: Justina Scharf
My hair grows very quickly so every few years I try to donate it.
I usually try to donate to Wigs for Kids but this year I was about an inch shy of their 12 inch requirement so I decided to look into who else I could donate my hair to. I ended up donating my hair to Children With Hair Loss, but their are so many great place to choose from.
Hopefully, this list helps you if you end up deciding to donate your hair to those in need.
Wigs for Kids — Hair Donations
24231 Center Ridge Road
Westlake, Ohio 44145
– Minimum of 12 inches.
– Hair cannot be permed, color-treated, or highlighted. Temporary coloring or highlights that washout are acceptable, but must be completely washed out before cutting.
12776 Dixie Hwy
South Rockwood, MI 48179
– Minimum of 8 inches. (Longer is Preferred)
– Non-chemically treated hair is preferred (but any hair in good condition will be accepted).
– Will take chemically treated hair in good condition.
– Gray hair is accepted.
806 SE 18th Ave.
Grand Rapids, MN 55744
– Minimum of 8 inches.
– No dyes, bleaches or chemicals.
– No more than 5% gray
234 Southern Blvd.
West Palm Beach, FL 33405
– Minimum of 10 inches.
– Hair that is colored or permed is acceptable.
– Hair that has been bleached (usually this refers to highlighted hair) is not usable. **If the hair was bleached years ago and has completely grown out it is fine to donate.
– Gray hair is accepted and sold to offset manufacturing costs.
– Dreadlocks, wigs, falls, hair extensions and synthetic hair are unusable.
– Hair cut years ago is usable if it has been stored in a ponytail or braid.
– Your hair must be clean and dry. (Wet or damp hair can mold during shipping)
– Pull curly or wavy hair straight to get an accurate length.
– Layered hair is usually okay as long as the shortest length meets the minimum length requirement.
– Cut hair using an elastic band. Make sure to cut above the elastic. Leave it in a ponytail or braid.
– Place hair in a ziplock bag and send in a a padded envelope. ( I usually also wrap my hair in a layer of tissue paper to keep it all together during shipping and delivery)
Have you found any other great places to donate your hair to?
By: Sue Anganes
Nothing ever stays the same. We often strive for tradition during the holiday season, but usually life does not allow us to do things the same way every year; kids grow older, new babies join the fold, marriage expands the family, and loved ones are lost. My secret to enjoying the holidays without stress is to be thankful for the people and loved ones around me. I try to focus on the things that truly matter—people and relationships—and try not to let the little details of the holidays become overwhelming.
This year, members of my extended family are moving to Europe for a couple of years due to a job assignment. My family will be joining their family for our Thanksgiving feast. We haven’t celebrated with them in the past, but this year our celebration will be all the more special, but also bittersweet. We will have one last large family gathering before we lose them for a couple of years. We will all be bringing our favorite dishes and desserts to share, and hopefully be relieving some of the cooking burden for our hostess.
Because I won’t be hosting and making the turkey at my house this year, I’m buying and saving a big bird in my freezer to cook some time mid-December when we will have another mini Thanksgiving feast at home. No one can ever have enough turkey leftovers!