At South Sound CARE Foundation, we are committed to improving the lives of individuals affected by mastocytosis through education, advocacy, and access to innovative treatment opportunities. Mastocytosis is a rare disorder characterized by the accumulation of abnormal mast cells that can affect multiple organ systems and significantly impact quality of life.
We are proud to partner with Northwest Medical Specialties to help expand access to promising investigational therapies for patients with advanced disease. Through an Expanded Access Program (EAP) for Bezuclastinib, eligible patients have been provided an opportunity to receive treatment when other options may be limited.
While every patient's journey is unique, we have been encouraged by the positive clinical responses and improvements we have observed among patients participating in this program. These experiences reinforce the importance of expanding access to innovative therapies and continuing to invest in rare disease research.
During Mastocytosis Awareness Month, we honor the strength of patients and families living with this rare condition and remain dedicated to advancing research, education, and treatment opportunities that bring hope to our community.
Patient Testimonies
“My resting heart rate has gone down about 20 beats per minute since starting. It’s wild. I don’t like that you had a rough week, I would give you a hug if I was there.”
– Patient, 33 Years Old (Drug 1 for one week into treatment)
“On the bright note, I am doing wonderful. Really! I can't believe we are at a week, and here I am navigating hundreds of pages of baffling paperwork, packing and functioning well. Summary: No significant side effects. Very mild vertigo on Saturday. Very mild headaches a couple times. Clearer head. Only one day of feeling tired. Spots are fading already, amazing. No flares. No reactions. Restless legs diminished considerably. Way less bone pain. All fantastic! And normally, this immensely stressful week would send me into a stress induced flare, not so. Also report a slight improvement with my normal bladder irritation.”
– Patient, 66 Years Old (one week into treatment)
“The improvement in cognition was almost immediate. The lessening of fatigue was more gradual, but evident. If it had not been for the lower back pain (which I’ve struggled with my entire life), I would be back out golfing. As it is, I am now walking mostly on my own and using a cane for stability. As of today, I am as alert as ever, and the fatigue is so diminished that I no longer fall asleep during the day or in the evenings. My appetite has returned to normal, and my wife says my general overall appearance is much improved. Oddly, the frequent night-time urination has gone down greatly, and I is getting a better night's sleep.”
– Patient, 86 Years Old
