What is it?
This is a giving campaign to replace our annual Gala, the largest annual fundraising event Pheo Para Alliance holds. There is no program to tune into, therefore no overhead costs to cover. This week, we ask you to Stay In, Feel Good, and Support Those Affected by Pheo Para. Make your own fun, while your generous contribution supplies the support.
Why Should I Give?
The best part of this online fundraising campaign is that all donations received will go directly towards supporting our mission. There is no venue, food or production company to pay for, so all funds raised support those affected. In fact, a special friend of Pheo Para Alliance, Betsy Herold, has agreed to provide a matching gift challenge. So, every dollar will be matched 100% up to $7,500, doubling your impact.
In addition, Progenics, a Lantheus company, is the presenting sponsor of the campaign. So, we are off to a great start, but we still need your help to raise funds during this pandemic.
How is My Donation Spent?
All funds raised go to programs that support those affected by pheo and para. For example, our recently launched Center of Excellence Program provides a directory of experienced pheo para medical centers where patients receive the best possible pheochromocytoma and paraganglioma care through a geographically diverse network of clinical centers. During our first application cycle, we received eleven applications from centers around the world. We anticipate announcing designations throughout 2021.
Pheo Para Alliance also invests in research to find new treatments through our tumor tissue donation program. This program represents patient-driven research, which wouldn’t be possible without tumor tissue donations from the community.
So, put on your slippers and robe, order in and mix up your favorite cocktail and donate. Our Campaign runs today through May 28, so don’t delay.
Together we are supporting patients and helping them become pheo para phearless. Stay In and Feel Good by donating today.
What is pheo para?
Pheochromocytoma (pheo) and paraganglioma (para) are rare slow-growing neuroendocrine tumors. They occur in both men and women equally, and they affect every race of people. 1 in 3,000 will develop a pheo or para sometime in their life. They can occur at any age, but the peak incidence occurs in the third to fifth decade in life.
Pheos develop in cells in the center of the adrenal gland just above the kidneys. Paras develop outside the adrenal glands, most commonly, in the head, neck, chest, abdomen, or pelvis. Both can produce an excess amount of hormones called catecholamines. This leads to persistent or episodic high blood pressure, severe anxiety, heart palpitations, sweating, headaches, and even stroke and heart attack.
Pheo para is called “the great mimic” because these symptoms can manifest in countless other illnesses.
Many patients diagnosed with pheo or para struggle with symptoms for years. A recent survey of patients indicated that 35% of patients received a diagnosis only after 4+ years of symptoms. Early diagnosis is important, because if left untreated, pheo para can metastasize, and ultimately, lead to death. But, if detected early, pheo para can be successfully treated and managed in the vast majority of cases. If possible, the treatment of choice for the condition is surgery to remove the tumor(s), but there are other treatment options.
Currently, there are approximately 20 genetic mutations identified that can be attributed to a greater risk of developing the illness, and can be inherited by children. Everyone diagnosed should talk to their doctor about genetic testing.