Some Run for a Medal. We Run for Life: My Two-Decade Battle with the Ruthless VHL Syndrome

I have only one life, and I fight every day to make it as beautiful and meaningful as possible.

My battle with Von Hippel–Lindau (VHL) syndrome has lasted for nearly two decades.

I first experienced symptoms during the ninth month of my pregnancy, believing it was nothing more than ordinary sciatica. The real truth came later—a diagnosis revealing that I had more than thirty tumors throughout my body. Years of major surgeries, Gamma Knife and CyberKnife radiation treatments, uncertainty, pain, and fear followed.

Yet the greatest blow was not my own diagnosis, but learning that my son, Dorian, had inherited the same genetic mutation.

VHL is a devastating, rare, inherited disease that can cause tumors in the brain, spinal cord, kidneys, eyes, and other vital organs. But it is also a disease that people can live with—through knowledge, regular monitoring, discipline, and extraordinary perseverance.

From Isolation in America to Historic Progress in Serbia

For years, we were left to navigate this journey on our own. I received treatment in the United States, where I participated in scientific studies dedicated to developing new therapies, including treatments for VHL syndrome. I lived with constant anxiety, wondering how I could gain access to a medication whose development I had helped support, yet was not eligible to receive because I was not a U.S. citizen.

During those most difficult moments, I was supported not only by my family and friends in Serbia, but also by wonderful people in America who stood by me with extraordinary generosity. I owe special gratitude to the Mijatović family—Ana, Igor, Vuk, and Nicole—as well as the Đorđević family—Petar, Milica, and Neda. Their kindness, selfless support, friendship, and unwavering belief that we would succeed gave me the strength to continue when everything seemed impossible. I will never forget their support, and they will always hold a special place in the hearts of Dario, Dorian, and me.

With their help, and the support of my family and friends, I found both strength and a solution. I decided that I would not fight only for myself and my son, but for every patient living with VHL in Serbia.

Today, I am proud to say that we have made historic progress.

We founded the VHL Serbia Rare Disease Association so that no patient would ever again have to face the healthcare system alone, searching for answers from one door to the next. Together with my sister Jelena, I continue learning how to lead the association and how to better support others facing this rare disease.

Our goal is to work alongside healthcare institutions to improve medical protocols and make the path to timely diagnosis, treatment, and support easier for every patient. I want to dedicate my personal experience to helping others because, throughout years of treatment, I have had the opportunity to learn from healthcare systems and treatment protocols that have proven successful around the world.

Our greatest achievement so far has been securing access to modern targeted therapy for patients in Serbia. For many of us, this is not simply a new medication—it is renewed hope and another chance at life.

That is why we call upon our physicians to collaborate and support patients living with VHL syndrome and other rare diseases, together with their colleagues in the United States. Physicians, along with patients like myself—who has received treatment abroad for more than a decade and participated in clinical research—can help improve the understanding of this disease, as well as the use of Welireg, which will be provided to Serbian patients through a donation from MSD. We sincerely hope that as many patients as possible will receive access to this treatment here in Serbia, and we thank everyone in advance for their future support and cooperation.

A Race Under the Stars in Sremska Mitrovica

Now it is time for our voices to be heard even farther.

It is with great pride that I announce that the VHL Serbia Association will be the official partner of the charitable sporting event, the 1st Sirmium 21/7 Half Marathon, which will take place on August 8, 2026, at 8:00 p.m. in Sremska Mitrovica.

I am especially pleased to share that more than 500 participants have already registered, demonstrating how this event is bringing together people with generous hearts and becoming a symbol of compassion, unity, and support for those who need it most.

For us, this race under the stars is much more than a sporting event.

It is a symbol of the fight for life, health, hope, and solidarity.

During the half marathon, we will promote:

• Raising awareness of rare diseases;
• The importance of healthy living and physical activity;
• Equal access to modern therapies for all patients;
• The work of the VHL Serbia Association and support for patients and their families.

I invite runners, recreational athletes, families, friends, fellow citizens, and members of the media to join us on August 8 in Sremska Mitrovica.

Come run, walk, and stand with people who fight the hardest race every single day—the race for their own lives.

Together We Can Change Lives

Finally, I would like to express my heartfelt gratitude to all the friends whose donations, encouragement, and belief in our mission have helped the VHL Serbia Association grow into a source of support for patients who need it most.

I also extend my sincere appreciation to the City of Sremska Mitrovica for its support, understanding, and willingness to work together in raising awareness about rare diseases and the importance of access to treatment.

Our fight does not end here.

In many ways, it is only just beginning.

That is why I invite everyone of goodwill, companies, and socially responsible individuals to support the work of the VHL Serbia Association. Every donation, regardless of the amount, helps us support patients and their families, raise awareness of rare diseases, improve patients' quality of life, and continue advocating for access to modern therapies.

If you believe that no one should have to face a rare disease alone, become part of our mission.

Your donation is more than financial support—it is a message that someone cares, that we are not alone, and that together we can change lives.

Donations can be made to the VHL Serbia Association:

Serbian Dinar Account: 265-6220310000958-93

Foreign Currency Account: 265-1000001216570-63

Thank you for believing that rare diseases deserve attention and support.

Thank you for running this marathon of hope with us.

Some run for a medal.

Some run for a personal best.

We run for those living with rare diseases.

See you at the starting line!

Ljiljana Alagić
President
VHL Serbia Rare Disease Association