I love someone rare...
Hi, my name is Julie Golob. I’m a professional competition shooter, national and world champion, author, veteran, wife, and mom. Please join me in raising awareness for a rare disease that has affected my family.
In August of 2019, our 11-year-old daughter was diagnosed with Juvenile Dermatomyositis (JDM). Approximately 2 to 4 children in a million in the United States are diagnosed with JDM each year and because of this small number in relation to other diseases and conditions, research and funding support is limited. There is currently no cure, but remission is possible for many patients after years of aggressive treatments.
JDM often starts with unique external skin conditions with red rashes and bumps. Inside the body, the immune system becomes confused and starts to attack the muscles. Internal inflammation leads to muscle weakness that can become very serious. No one really knows how or why JDM starts but left untreated it can be life-altering, and even fatal.
Our story
Why Awareness Matters
Education for Doctors
The simple truth is many physicians don’t know about JDM. We are very fortunate that our daughter’s diagnosis was caught rather early. After several doctor appointments for her various skin conditions, our daughter was diagnosed 8 months after the first signs of the disease. The more people that know about JDM, the more likely and sooner those with this autoimmune disease can receive necessary and effective treatment.
Our daughter missed many days of school for medical tests including blood work, an MRI, echocardiogram, electrocardiogram, and x-rays. Upon diagnosis, we began an aggressive regimen of a variety of oral prescription medications, infusions of steroids and IVIG, and weekly shots of chemotherapy drugs. Learning about the disease, enduring the tests, treatments and side effects along with the emotional toll that comes with the diagnosis were all challenges we never imagined we would face as a family.
Encouraging a Healthier Lifestyle
Our daughter’s treatment was going as well we could hope for until she experienced a flare-up caused by a case of the common cold. Those with compromised immune systems must be vigilant against anything that can make the immune system work harder. In addition to a runny nose, her rashes and muscle inflammation returned.
Raising awareness for this disease will help encourage people to consider their own hygiene habits. Good handwashing practices, covering the mouth during sneezes and coughs, and avoiding people when you are sick are ways that not only can keep you and your loved ones healthier but these simple steps can make a huge difference in the lives of those who have JDM or anyone who has a compromised immune system.
Finding a Cure
Finally, the more people that know about the disease the better the chances to find a cure. Because this autoimmune disease is so rare, research, funding, and support are often limited. Pharmaceutical companies spend time and money on diseases and conditions that affect more people. To help those who suffer from JDM and to increase research and funding for medications and treatment, please consider supporting The Cure JM Foundation.
Cure JM is a 501(c)(3) nonprofit organization focused on finding a cure for juvenile dermatomyositis and juvenile polymyositis (JPM), the rare and life-threatening autoimmune diseases collectively known as juvenile myositis (JM). This Great Non-Profits Top Rated Charity works with doctors, hospitals, patients and research facilities as well as spending time in Washington D.C. to not only find a cure but also assist families working towards remission. Learn more at curejm.org.
Ways You Can Help
- Share this page (juliegolob.com/curejm) with your friends and family via, email, twitter, Facebook, Instagram or any other way you can.
- Make a one time or recurring donation here that directly benefits the Cure JM charity.
- Donate platelets! One of the infusions our daughter receives is called IVIG – intravenous immunoglobulin. It’s been her most effective treatment yet and it comes from platelet donations. You can even earn extra cash by donating your platelets. Learn more about this type of donation from the Red Cross.
- Take a photo of your every day carry (EDC) set up and share it on social media with #edc2curejm #gunownerscare. Include a link to juliegolob.com/curejm
- Snap a photo of you out in the field, your favorite hunting spot or trusty hunting companion and share it using #hunt2curejm. Include a link to juliegolob.com/curejm
- Shoot the Aim to Cure JDM Challenge and upload a photo or video to social media using #aim2curejm. Add a link to juliegolob.com/curejm with the donation suggestion of $23 dollars. Scroll down to learn more about the shooting challenge and download the target below.
- Pause to send a prayer or well wish. I firmly believe in the power of goodwill. If you pray, add families who are dealing with this diagnosis to your personal prayer list or wherever you worship. If you aren’t religious, a warm well wish is a thoughtful kindness and way to support through positivity that benefits all.
- Set up an event or stage at your next local shoot to show how shooters care and help make a positive difference in people’s lives. You can use the Aim to Cure JDM Challenge (see below) or set up any other stage as a charity event. Charge a nominal fee to cover any associated setup costs and add a donation suggestion for participants. Tally up the total raised and make a contribution here. Share results and images from your event on social media using #aim2curejm and #gunownerscare
Help spread the word on social media with
#aim2curejm
#edc2curejm
#hunt2curejm
Aim to Cure JDM Challenge
Though it may seem simple, significant thought went into this drill to make it usable for many platforms and ability levels. First, the strings are 5 rounds each so you can shoot the Aim to Cure JDM Challenge with any firearm with a 5 shot capacity. Hit the range with a j-frame revolver, tricked out race gun or even a 5-round hunting rifle. The drill is designed to let you shoot what you have.
23 is the number of letters in juvenile dermatomyositis. It’s also the number of rounds required for the drill. The Aim to Cure JDM target uses 5 different shapes and the number of sides/lines of each target adds up to 23. There are 5 strings of fire and all but the last string requires 5 rounds. The final string is 3 rounds. These numbers represent the goal of a 3-5 year treatment plan for remission.
The procedure is listed right on the target and represents the journey with JDM. Targets vary in size and difficulty representing the emotional struggle for patients and their families. String 1 is 5 shots on the largest, 5-sided target. Like the need to get diagnosed, this string stresses both speed and accuracy. Strings 2 and 3 represent all the medical tests, lab work, and step-by-step treatment plans. String 4 requires 1 shot on each target and is the only string to reengage the first target of the challenge. This is a symbol for flare-ups and other potential setbacks patients can experience. The final string of 3 shots on the 5-pointed star is a string of fire that celebrates the ultimate goal…
REMISSION!
Feel free to place the target up at a distance you feel comfortable shooting. Note that distance in the scoring section of the target. If using a handgun, consider shooting from 3 yards or 15 feet to start with. If you are shooting a rifle try it at 7 yards or 21 feet. After successful runs, challenge yourself by stretching out the distance.
If you have a shot timer, record the time it takes you to complete each string. If you don’t have a timer you can easily use your smartphone. Set a par time you’re comfortable with or you can begin by setting a 5 second time limit to use for each string.
The suggested start position is with hands relaxed at sides for those drawing from a holster. You can also begin with the firearm in hand or shoulder at the low ready with your trigger finger outside the trigger guard. Checkboxes in the scoring section of the target provide a way for you to annotate your start position.
The goal is to score hits inside all the designated target shapes. You can make the suggested $23 flat donation here or $1 per every hit inside each shape.
Aim to Cure JDM Challenge
Ways to Shoot Aim to Cure JDM Challenge
Here is a list of variations for the Aim to Cure JDM Challenge. Try them all or come up with your own way to use the target.
- Handgun 3 at 3 – This version uses a low ready start. Set the target at 3 yards with a par time of 3 seconds per string. Score hits.
- Handgun 5 at 3 – This version incorporates drawing a handgun from the holster. Set the target at 3 yards and use a par time of 5 seconds per string. Score hits.
- Speed Draw at 3 – Set the target at 3 yards. For each string draw from the holster and record time it takes to complete each string. Score hits.
- Speed Draw at 5 – Set the target at 5 yards. For each string draw from the holster and record time for each string. Score hits.
- Handgun Ready for Speed 3 – Set the target at 3 yards. Using a low ready start, record the time and hits for each string.
- Handgun Ready for Speed 5 – Set the target at 5 yards. Using a low ready start, record the time and hits for each string.
- Off-hand Rifle Speed – Set the target at 7 yards. Using a low ready start, record the time and hits for each string.
- Off-hand Rifle 3 at 7 – Set the target at 7 yards. Start at the low ready and use a par time of 3 seconds per string. Score hits.
- Strong Hand Only Pistol – Set the target at 3 yards. For each string draw from the holster or begin at the low ready and record time for each string. Score hits.
- Support Hand Only Pistol – Set the target at 5 yards. For each string draw from the holster or begin at the low ready and record time for each string. Score hits.
Download the Challenge
Just click on the image below to download, print, shoot and most of all share with #aim2curejm
