treatment

Fighting PNH While Helping PNH Patients

Person's Name:

Joe Ellenberger

I’m 31-years-old, and I was diagnosed with PNH in 2009 when I was 24.

I am generally athletic, and in college I was a wrestler. I knew what I could expect when training, competing, and recovering from competition. I transitioned from wresting to mixed martial arts (MMA) in 2008. Naturally, when I started that, I wanted to be sure that my training and recovery were the best they could be.

Bone Marrow Disease(s):

Paroxysmal Nocturnal Hemoglobinuria (PNH)

Content source:

eBulletin / eInsider (story of hope)

Selinexor (KPT-330)

Saved by Her Twin Sister

Person's Name:

Kathryn Bradley

I was your typical 14 year old teenager who always enjoyed spending time with friends and playing sports. On and off for about two years, my parents would take me to see different doctors to figure out why I had aches and pains, stomach issues and fatigue.

Bone Marrow Disease(s):

Aplastic Anemia

Content source:

eBulletin / eInsider (story of hope)

Pure Red Cell Aplasia (PRCA)

Chronic Myeloproliferative Neoplasms (MPN)

Chronic Myelomonocytic Leukemia (CMML)

Chronic Lymphocytic Leukemia (CLL)

Cleveland (OH) BMT Support Group

Cleveland Clinic holds a bone marrow transplant support group which meets once every month. At the meetings, BMT patients, families, and caregivers will connect with each other and share experiences. For more information, please contact - Jane Dabney, LISW-S, OSW-C, at (216) 445-2483.

Cleveland Clinic
9500 Euclid Avenue
Cleveland, OH 44195

Lebanon (NH) Virtual Blood Cancer Support Group

Dartmouth-Hitchcock Norris Cotton Cancer Center holds a blood cancer support group on the second Wednesday of every month from 3:30 to 4:30pm. At the meetings, blood cancer patients and their families will connect with each other and share experiences. Registration is required for you to receive meeting details and login information. To register, please contact - cancersupport@hitchcock.org.

Norris Cotton Cancer Center
One Medical Center Drive
Lebanon, NH 03756

Sacramento (CA) LLS Virtual Blood Cancer Support Group

We are pleased to let patients and families know about the LLS support group opportunities around the country. These support groups are facilitated by LLS, not AAMDSIF. This group meets on the first Wednesday of every month from 6:30 to 8:00pm. If you would like to join the Sacramento (CA) virtual blood cancer support group, registration is required. Use this link to register and receive the login information to join the group, https://www.llsform.org/ho0999SER/SCM1FSG/index.html.