Maria Kuenster is a 24-year-old young woman who was diagnosed with DIPG shortly after her college graduation in June of 2020. She studied healthcare management while at University and was hoping to go into technology sales following her graduation. However, her career plans were put on hold due to her DIPG treatment. Maria now hopes to start a career in medical device sales.
Since we last spoke with Maria, her life has changed. It is rare for adults to get diagnosed with DIPG, and her age has also hindered her from joining clinical trials in the past. However, Maria was able to get on a clinical trial which greatly improved her DIPG treatment. Maria’s tumor is now stable according to her most recent MRI, due to the medication she is on which is an IDH inhibitor that directly targets her tumor’s IDH mutation. This is great news for Maria, who was very happy to hear that her tumor is stable. She says that aside from fatigue and headaches, her current treatment does not affect her day-to-day life too much, which she is very happy about.
When we last spoke to Maria, she was working on a campaign to fundraise for DIPG titled “Maria’s Miracle” in which she had a friend from college help her design merchandise to benefit DIPG research. When we last spoke, the campaign was not yet completed, and we are excited to announce that Maria ended up raising nearly 45 thousand dollars for DIPG research throughout this campaign, which she ran all by herself.
CRF was saddened to hear that Maria’s dog Jordy passed away last September, but her dog Liza, who she got right after learning of her DIPG diagnosis in June of 2020 has been great for her. Liza loves Maria and follows her everywhere, and she has been a great comfort to her throughout her DIPG treatment.
Maria was a Rock Star at the 12th Annual Cristian Rivera Foundation Celebrity Gala. Actor/SNL Star/CRF Board Member Kenan Thompson invited her to speak and she received a standing ovation after she spoke. It was impossible to not be moved by her strong and powerful words. We were so grateful to have such an eloquent young woman as herself share her story and experiences on the gala stage. View video below to view her speech.
She and her family have been celebrating her sister’s engagement and spending a lot of time together. Maria is very excited for her sister’s wedding this May, for which she will be the maid of honor. Maria loves the dress she is to be wearing and is overall looking forward to the event.
Maria’s advice for any new DIPG patients and their families is to advocate for themselves. She thinks that because DIPG is so rare, with only 200 cases per year in the US, it is necessary to advocate for yourself and make sure that your or your child’s needs are addressed. When asked if she had any advice for anyone else who is struggling with DIPG, she said, “I would just say the most important thing is to advocate for yourself, especially with DIPG. There are only about 200 cases in the United States every year so it’s super important to advocate for yourself and [find] out what is the best treatment for you,”. She learned to advocate for herself over time while undergoing DIPG treatment and thinks that teaching others about the cancer in order to get better care is incredibly important. Maria thinks that it is very important for CRF and other organizations like it to continue to advocate for patients since addressing patient needs is the most important thing.
We are so grateful to Maria for speaking to us and catching us up on what has been going on in her life. We were so glad to hear that Maria is doing well, and we have nothing but hope for her future.
By Keiyara Vanhook