Join Us in Raising Awareness of these Causes in May

By: Hannah Barnett, Communications Intern

Patient advocacy organizations work tirelessly to educate, promote, advocate, and raise awareness and funding for their causes. Awareness months give us the opportunity to rally around a common objective and show these organizations how much we appreciate their work. Here’s how you can help advance these NHC members’ missions and spread awareness.

Arthritis Awareness Month

The Arthritis Foundation wants to take a stand against the growing numbers of adults, children, and families affected by arthritis during National Arthritis Awareness Month. You can help by:

• Signing up and participate in one of countless events fundraising for a cure.
• Becoming an Arthritis Foundation Advocate and improving the lives of people with arthritis by advocating for change on Capitol Hill and the states.

Celiac Disease Awareness Month

Beyond Celiac wants you to remember that there’s #NoCureWithoutU, so they’re celebrating Celiac Awareness Month by raising funds to accelerate celiac disease research. Here are a few ways you can help them advance their mission:

• Share. Did you know that most people need to see a message seven times to remember it? The more you share about Celiac Disease info on your feed, the more you’ll help raise awareness. Beyond Celiac is offering infographics, research stories, and messages on their social media sites so you can share and re-share over and over again.
• Donate/Raise. Do something fun this Celiac Awareness Month to raise money for research. There are countless of ways to do so: Start a Facebook Fundraiser, direct your birthday gifts to Beyond Celiac, walk a 5K, throw a party, start an individual giving page in honor of a friend or family member that has celiac disease or who supports you.
• Join. This year, Beyond Celiac launched , Go Beyond Celiac, an online community that collects stories from people with celiac disease about their journeys before, during, and after diagnosis. If you have celiac disease, you can join this community and provide clues to help researchers find a cure.
• Step Beyond Celiac. If you’re in Kansas City, Philadelphia, or Dallas, you can join Beyond Celiac at their Step Beyond Celiac 5ks to raise funds to support research efforts.
• Follow the Celiac Disease Foundation to lean more as well.

Huntington’s Disease Awareness Month

Huntington’s Disease Society of America has launched the social media initiative #LetsTalkAboutHD during Huntington’s Disease Awareness Month to encourage families to share their experiences with Huntington’s Disease (HD). Submit your story through photos, videos, or writing to help open up the global conversation about HD. Check out their campaign toolkit for more information as well as social media sample posts, ways to get friends and family involved, and key messages about HD.

Lupus Awareness Month

On average, it takes nearly six years for people with Lupus to be diagnosed from the time they first notice Lupus symptoms. Since getting an early diagnosis is critical to preventing long-term consequences of the disease, the Lupus Foundation of America wants you to commit to raising awareness of Lupus and its symptoms. Some of the ways to get involved:

• The Lupus Foundation has provided all the resources necessary to raise awareness of Lupus and its symptoms on social media. Options include temporary profile picture overlays, sharing infographics, and retweeting their awareness messages.
• Whether it’s a purple shirt, hat, sunglasses or more, Go Purple To End Lupus on May 17 and share why you’re wearing purple and support efforts to advance lupus research by either raising funds or making a donation.
• Team up with Make your Mark, the Lupus Foundation’s community fundraising program, to organize a fundraising event.

Melanoma/Skin Cancer Detection and Prevention Month

During Melanoma/Skin Cancer Detection and Prevention Month, find resources about early detection, diagnosis, and staging online at the American Cancer Society.

Mental Health Month

Mental Health America (MHA) is expanding upon last year’s theme of #4Mind4Body and taking it to the next level, as they explore the topics of animal companionship (including pets and support animals), spirituality, humor, work-life balance, and recreation and social connections as ways to boost mental health and general wellness. Join them in spreading the word by using the May is Mental Health Month toolkit.

Osteoporosis Awareness and Prevention Month

In honor of their 35th anniversary, the National Osteoporosis Foundation has created free downloadable resources including a poster and interactive tool. Help them promote National Osteoporosis Month and the importance of staying bone strong by sharing the free downloadable resources.

Psoriatic Arthritis Action Month

Psoriatic arthritis (also known as “PsA”) is a debilitating, chronic, inflammatory joint disease that affects up to 30 percent of people with psoriasis. People with PsA experience pain, joint stiffness, swelling and extreme fatigue. Many people with PsA wait more than two years after experiencing symptoms before receiving a diagnosis and starting treatment. Waiting even six months to start treatment after first noticing symptoms can lead to worse long-term outcomes.

During Psoriatic Arthritis Action Month, the National Psoriasis Foundation (NPF) wants people to know that with today’s treatment options, a life with less pain is possible. NPF has the resources to help. To get started, request a free PsA kit from the Patient Navigation Center. Additionally, an NPF patient navigator can help people learn about treatment options and find solutions to live their healthiest life.

The NPF is also kicking off an Instagram campaign. All month, people can get involved by sharing a photo and caption of what thriving with PsA means to them, including the hashtag #HowIThriveWithPsA. Be sure to tag @Nationa.Psoriasis.Foundation and receive a free NPF jar gripper.

Visit the NPF website and social media pages for special PsA content, including news on the latest treatment options, new podcast episodes, an online screening tool to assess your PsA risk and more. The National Psoriasis Foundation is committed to improving the lives of more than 8 million Americans living with psoriatic disease and funding research that will one day lead to a cure.

Visit www.psoriasis.org to learn more.

Spondylarthritis Awareness Month

The Spondylitis Association of America is going digital for this years’ Spondylarthritis Awareness Month.  Share their graphics, hashtags, cover photos, and infographics to raise awareness of their cause with your followers and online community.

Osteogenesis Imperfecta Awareness Week (May 4-11)

Help the Osteogenesis Imperfecta (OI) Foundation to officially proclaim OI Awareness Week in every state. You can find more information on how to write and submit a proclamation request to your state government here.

You can also form a “Better Jeans for Better Bones” team to help fundraise for OI. Everyone on the team will choose a gift amount to donate and a day to wear blue jeans to show support for the OI community. Although it can be done at any time of the year, the national date is on May 10.

Visit www.oif.org/awarenessweek to learn other ways you can show your support.

Food Allergy Awareness Week (May 12-18)

Each year elected officials across the country officially recognize Food Allergy Awareness Week. These proclamations show that our government officers care about residents with food allergies and can boost media attention of the food allergy community.

These proclamations are made in response to public requests, so this May The Food Allergy Research and Education (FARE) wants you to make sure that your state recognizes Food Allergy Awareness Week.

Autoimmune Arthritis Day (May 20)

For more information about this cause, follow the Arthritis Foundation and the American Autoimmune Related Diseases Association.

Tourette Syndrome Awareness Month (May 15-June 15)

The Tourette Association of America (TAA) offers easy ways to raise awareness, foster acceptance, and support its mission to make life better for all people affected by Tourette and Tic Disorders.

People with Tourette Syndrome have long been misunderstood and mocked. Take the Tourette Pledge to stop using Tourette Syndrome as a punchline.

Go social by spreading the #ThisisTourette and #TouretteAwareness hashtag with your followers.

Participate in Teal Tuesdays: Wear teal on Tuesdays to support Tourette! Post some pictures on Social Media and tag the Tourette Association.

Lace up your sneakers and join a Team Tourette Event to help raise funds for research, educational programs, awareness activities, and other services. Join TAA for their annual 5k walk/run on May 19 at Flushing Meadows Corona Park. You can also run on behalf of Team Tourette at the upcoming TCS New York City Marathon.

Contact your Congressional leaders to advocate for the most pressing public policy issues that face the Tourette Syndrome community.