Why Is There So Much Fundraising for PAH?
Pulmonary arterial hypertension is a rare “orphan” disease. The relatively small number of patients living with PAH means that they all need to band together to raise awareness, support each other and raise funds to further research in finding treatments and eventually a cure.
What Are The Goals Of Fundraising for PAH?
Pulmonary Hypertension fundraisers usually aim to achieve at least 1 if not more of the following 3 goals.
- To raise money. This is perhaps the most obvious goal of fundraising. PAH fundraisers may be raising money for the Pulmonary Hypertension Association (PHA) which helps many pulmonary hypertension patients. The PHA uses donations to provide education, lobby government officials and fund research aimed at finding a PH cure.
- To raise awareness. Many patients have symptoms of PAH for over 2 years before they are accurately diagnosed. Raising awareness is an important part of decreasing the time between symptom onset and treatment for PAH. It is important to put PAH on the radar of primary care physicians, cardiologists, pulmonologists, rheumatologists and any patient having the symptoms of pulmonary hypertension to know about pulmonary arterial hypertension.
- To support patients. Fundraisers bring PAH patients, caregivers, friends and family members together for one event. Often PAH patients feel isolated by their disease. It is hard to look “normal” and be suffering from such a catastrophic illness. Friends and family members may not understand why a patient can walk through the grocery store one day and barely walk to the mail box the next. Having PAH patients come together is empowering and decreases the feeling of isolation.
How Do I Get Involved?
Pulmonary Arterial Hypertension fundraisers are happening every month all over the United States. Your pulmonary hypertension specialist will often have fliers for upcoming fundraisers in their office or you can ask them to connect you with the PHA contact person in your region. Often your local PAH Support Group will be involved in the fundraisers in your area. You can find out more about local support groups and events on the PHA’s website at phassociation.org. If you don’t find something you are interested in participating in consider starting your own.