Team Luke/PUFFY POSSE
Two years ago we did our first 5K to raise awareness for Luke's blood disorder Hereditary Angioedema. We didn't know anything about this disease or anyone who had it. We didn't have access to medication and our only alternative was going to the ER with every attack. At our first HAE in Motion 5K, we met some amazing people who provided us with numerous resources to pursue. Since then, we now have home medications for infusion, have traveled to US and International Conferences to learn about how to Take Control of your life living with HAE, and Washington DC to advocate for continued funding and research for current medications and future therapies. We have met many inpiring patients and families who have helped us along the way and some who are still struggling to get the treatment they need.
We look forward to participating in our third HAE in Motion 5K to continue to raise awareness for HAE! REGISTRATION IS FREE!!
Please come join us for the HAE-In-Motion 5K to support a worthy cause! All proceeds go to the US HAEA, a non profit organization that provides HAE patients and their families with a support network and a wide range of services including physician referrals, disease information, and individualized patient support. The US HAEA is dedicated to advancing and conducting clinical research designed to improve the lives of HAE patients and ultimately find a cure.
I hope to see you at the event, but if you cannot participate, please consider a donation to help me reach my goal!!
Thank you for your support!!
US Hereditary Angioedema Association - HAEA
Get the Facts Did you know that:
Hereditary Angioedema (HAE) is a very rare and potentially life-threatening genetic condition that occurs in about 1 in 10,000 to 1 in 50,000 people.
HAE symptoms include edema (swelling) in various parts of the body, including: hands, feet, face and airway (throat).
Patients often suffer excruciating abdominal pain, nausea, and vomiting caused by swelling in the intestinal wall.
Swelling of the airway or throat is particularly dangerous, because it can cause death by asphyxiation.
Children have a 50% chance of inheriting HAE if one of the parents has the disease.
The absence of a family history does not rule out the diagnosis of HAE, as scientific reports indicate that as many as 25% of HAE cases result from a spontaneous mutation of the C1-inhibitor gene at conception. Children of these patients may also inherit HAE.
HAE patients have a defect in the gene that controls a blood protein called C1 Inhibitor. This defect causes a biochemical imbalance that produces swelling. HAE is also known as C1 Inhibitor Deficiency- Type I and Type II.