The easiest way to contact a newspaper editor is to search online for local newspapers. Visit the “Contact Us” section or search for an appropriate contact in the online directory. Contact them by email and follow their submission guidelines – generally, copy and paste your letter to the editor in the body of the email. Remember to include your email and/or phone number as contact information.

When your letter is published, be sure to share it with your family and friends, as well as INADcure. Don’t forget to post the link on social media using the hashtags #RareDiseaseDay and #WorkingOnAMiracle. Your story will be part of Rare Disease Day conversations around the world.

Subject: Uniting on Rare Disease Day for Breakthroughs in ANAD Research

To the Editor:

February 29 is the rarest day on the calendar, and I invite your readership to do something meaningful to mark this important day.

Every year, on the last day of February, millions of people in over 80 countries around the world observe Rare Disease Day®. Everyone knows someone with a rare disease. More than 10,000 known rare diseases in our country impact 1 in 10 Americans. Rare diseases are not so rare, but they present complex daily challenges for patients and their families.

Our family is now, unfortunately, battling these complex daily challenges head-on. Nevertheless, we wanted to join the fight against Atypical Neuroaxonal Dystrophy (ANAD) and do everything in our power to help our [son/daughter]. [Name] was diagnosed with ANAD, a form of PLA2G6-Associated Neurodegeneration (PLAN), an ultra-rare, neurodegenerative disorder that takes away all of a child’s abilities before it takes away their life. There are an estimated 5,200 cases of PLAN globally, primarily affecting young children, and at this time, there is nothing that stops the progression of this disease.

ANAD is a devastating pediatric neurodegenerative disease that robs children of their language, muscle strength, and cognition. As infants, children with ANAD start meeting typical milestones, but then, between the ages of 4 and 19, they slowly start to lose those benchmarks. ANAD is rarer than INAD, another form of PLAN, and has an undetermined lifespan. However, it is presumed to exceed that of INAD, which ranges from 5 to 10 years, due to its later symptom onset and more gradual disease progression.

After wrapping our minds around what was to come, we were devastated, heartbroken, and felt completely helpless. In those darkest times, we found a small glimmer of hope. We connected with the INADcure Foundation and learned that not only is their team dedicated to advancing the basic understanding of ANAD, but they have also been working aggressively with the scientific community to discover ways to treat it and eventually cure this devastating disease effectively.

This Rare Disease Day, the INADcure Foundation is launching a “Working on a Miracle” campaign and is asking everyone to BE part of our miracle. Our child’s only hope is the INADcure Foundation’s gene therapy program, but we need to raise vital funds to continue supporting their preclinical studies so that the program can advance to a human clinical trial. This would BE our miracle.

Some rare diseases, such as cystic fibrosis, sickle cell disease, and Lou Gehrig’s disease (ALS), are well known to the public. Many others, like ANAD, are not. Adjusting to a life full of specialists, doctor appointments, and therapists, as well as advocating daily for access to better care and better equipment, can be intensely overwhelming. We cannot do this alone, as we are already inundated with the burden and stress that comes with providing round-the-clock care. This is why we are reaching out to the public for help; we believe that together, we can turn the tide in the battle against ANAD.

Raising public awareness truly makes a difference and gives families like ours hope that miracles can happen, especially if you work hard toward making them happen – and that new, life-saving/life-altering treatments can be possible if we all work together.

Imagine a world where a cure for ANAD is within reach, and those grappling with its complexities can find hope and healing. Now, envision the impact your support can have in turning our joint vision into reality. As a member of this community, I encourage everyone reading this to learn more about ANAD, get involved, and become an essential part of our miracle! Visit www.workingonamiracle.org and show your gesture of solidarity with those who face the challenges of having a child afflicted with ANAD.

Rare Disease Day is sponsored in the United States by the National Organization for Rare Disorders (NORD®), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases. NORD’s motto is “Alone we are rare. Together, we are strong.” For the 25-30 million Americans throughout the country and for all the patients and families right here in our community, this Rare Disease Day, let’s be strong and make miracles together.

Sincerely,
[Insert your name]
[Add an image of your family]

The INADcure Foundation is a 501(c)3 tax-exempt organization, and your donation is tax-deductible within the guidelines of U.S. law.