Our May Calendar

Get excited everyone because soon…

And we all know what that means, right??

Yes, it’s Lupus Awareness Month!!!  The Purple is the New Black team is beyond excited for May 2016 because we have some fun and interactive things planned for you all. *Remember activities are more fun if everyone joins, so don’t be shy about sharing your Lupus spirit with us via Twitter, Facebook, or our NEW Instagram!

Here’s what we have planned:

May 1 begins Lift for Lupus

✔ Lift 15 reps every day in May

✔ Upload a video or a photo of yourself completing the challenge on Instagram or Facebook using #LiftForLupusChallenge and ‪#‎PurpleIsTheNewBlackBoston

✔ Every upload, challenge someone new to participate!

✔ Don’t forget to include our donation link

 

May 4, 11, 18 & 25 On Wednesday we wear purple

Every Wednesday for the month of May wear purple and tag us on Instagram! @purpleisthenewblackboston

 

 

 

 

 

 

May 10 World Lupus Day!

Show your lupie love by donating $10 to lupus awareness.

May 20 POP (Put On Purple)

Donate $20 to our team and don’t forget to throw on your favorite purple ANYTHING and post a selfie

Stay tuned for more purple fun to come the rest of the summer (check out the blog and our Facebook page for more details)!

Happy Walking!

Purple is the New Black

Fear

Getting diagnosed is a traumatic event. A million things rush through your mind. Am I going to die? Can I enjoy my life the way it is? Will I have to quit school or my job? Can I drink? Okay, the last one was mine because I felt like I needed a shot of vodka (or two) in the moment.

But, one thing I didn’t think about was, how will my family and friends react? Will they be supportive? Will they brush it off?

There were mixed feelings. Some people were insanely supportive. They would constantly check-in on me to see how I was feeling or what they could do for me. Others really questioned and denied what I was going through. “It must be a misdiagnosis” “Did you get a second opinion?” “Pray to God” “You just need to get out of bed and exercise”

At first, this irritated me. How could anyone doubt my illness? Trust me, I would give anything to never feel this way. I wouldn’t wish this disease on anyone—even my worst enemy. Yet, they did.

After months of reflecting and thinking—a la Carrie Bradshaw—I realized that I could not be mad at them. I couldn’t be angry because this was fear. Fear of the unknown.

Let’s be real. Lupus is not a well-known disease. You mention cancer, diabetes, heart disease—people know those. Lupus is quite complex because it’s an invisible illness. You don’t see the effects, pain, or discomfort. You see the person you have always seen and they don’t look a bit different.

Now, if you’re like me, you must be thinking, “Why are they afraid?! This is happening to me not them!” But that couldn’t be more wrong. Imagine your best friend, sister, daughter, or girlfriend suddenly became ill, how would you react? Now, imagine that same person and that illness is lupus. How would you react? Honestly, I would be petrified.

Fear presents itself differently in other people. Some people embrace the fear and face the situation with their chin up. Other people are too afraid and run away from the truth. They try to find other excuses or solutions. You want to be mad at them but truth is, you can’t. Trust that they love you and they are trying their hardest to understand you. So help them. Talk about it. Tell them about your spoons, brain fog, your hip pain, whatever you want to say. But, most importantly, forgive them. They will come around, they always do.

Peace, Love, & Butterflies,

Gladys Marie

*Disclaimer: This applies to close friends and family not strangers that purposely attack those with invisible illnesses…that’s another post for another day. 😉

Saying Thank You

“If only there was enough space on this tiny card to evoke my unfettered joie de vivre for what you have done. The gaiety, the mirth, the heavenly bubbling of every effusive cell that sings inside me for your kind and pithy offering.”
― Joshua Braff, The Unthinkable Thoughts of Jacob Green

If sorry seems to be the hardest word to say/express. We’re going to throw out a vote for “Thank you” being the hardest phrase to say/express. Do you handwrite a card? What should the card say? Should there be a word count? Do you send a little gift in return? Is there even a best way to show the giver how much their gift has meant without seeming cheesy or fake? Maybe we at Purple Is The New Black have spiraled down the rabbit hole a bit with this, but it IS important to make the small effort of thanking those who have provided any kind of donation or support to your team!

 

The classic thank you card  Maybe this is giving you flashbacks of being forced to sit at your kitchen table and write out thank you cards for each birthday or Christmas gift from your relatives (just me?)  Give that classic handwritten thank you card new life! Remember that this ISN’T a thank you to your grandma for the socks. You can’t get away with a fast line and a hasty signature. Instead consider having each team member write a small note in each card. If you’re holding fast to the classic business-like thank you letter make sure to keep it structured. Begin with a line of thanks, continue with a fun memory or detail from your walk, and then conclude with heartfelt wishes. These do not have to be long sentiments but they must sound sincere (take your time and if you get tired pause or stop for the day to avoid sounding generic).

I just called to say…  This could be a fun one for the more outgoing members of your team. A popular thank you method for bands, calling your donors to have a quick chat and personal thank you is a great way to connect and give a more personal feel to your cause. *For the phone-phobic: this does not have to last an hour. It should go a little something like this:

RingRing

“Hello”

“Hi, is this Donna Lewis?”

“Yes…”

“Hi, Donna! This is Lauren from the Lupus walk team, Purple Is The New Black. I just wanted to call and thank you so much for your donation. My team and I really appreciate you taking the time to donate to this cause and our team specifically.”

“Oh, of course! No trouble at all!! How was the walk?”

…Convo continues for another minute and then you hang up.

AND SCENE!

See? Not a big deal. If the person doesn’t answer you can always leave a short and thoughtful message. If you aren’t able to acquire donor phone numbers you can always send a thoughtfully worded email.

It’s in the details Sometimes it’s the little details people notice and remember. Instead of buying generic thank you cards from the store consider having a team building night with your walk team to make and decorate cards in preparation. An idea I’m really loving is a plain white card on which each member of the team leaves a purple lipstick kiss . With individual notes inside this is not only a great reason to buy that purple lipstick you’ve been eyeing, but it’s also a great way to add a personal touch to your thank you!

 

Gifts (tacky vs too much) This is one you’ll want to treat carefully. Gift giving for donations can be a bit tricky, so you might want to use this sparingly. Perhaps gift the big donors with your team t-shirt or a specially designed “I donated to…team name…” shirt. The t-shirt idea is a suggestion that could be substituted with anything else, but remember there is little more people love than free t-shirts.

 

Smile! I think this is the cutest idea, but it needs to be done in a timely manner! Make sure to take a few team pictures during the walk (upload to all social media, obviously) but also turn them into fun magnets and send two or three to donors as a thank you!

 

Maybe none of these ideas appeal to you, but you’ll want to keep in mind that creating a personal connection to your donors will not only help you stay connected in the future but it will also give a face to the cause.

Happy Walking!

Purple Is The New Black

Our Captain’s Challenge

 

As I’m writing this entry, I’m looking out the window watching the last snowflakes of the season fall. Although it is the second day of spring, Boston seems to fall a little behind on seasons. Looking at the snow and the sun attempting to break through the clouds made me think about the infamous saying, “Out with the old and in with the new.”

Last week, I signed up for a fitness challenge. It’s a 28-day challenge through FitGirls Guide (check them out on Instagram @fitgirlsguide). I didn’t choose to sign up for a fitness plan to lose weight or get super ripped (although, a firm Beyoncé booty would be nice) but for my health.

See, it’s easy to say, “I can’t run, my knees hurt. I can’t lift, my back hurts. I can’t take the stairs, my hips hurt.” The list goes on and on and on. I know this because those were my excuses. And I believed them. Reality struck me in the face when I noticed that I couldn’t walk all the way up to the third floor to take my students to class without gasping for air. Or that shaving my legs caused me to cramp. Sure, it’s lupus but it’s also me.

I notice Lupies, myself included, are always preaching about staying positive, being optimistic, and never letter lupus get the better of you. Okay, so, we don’t let lupus control our emotions or our outlook on life but why—and I mean this in the most loving way—why do we let lupus consume our physical selves? If you’re not stretching, walking, and being active, you’re letting your muscles become stiff and more painful. You are giving into lupus by not moving your body.

To be clear, this message isn’t about judging anyone or forcing anyone to bandwagon a certain lifestyle. This message is love. It’s pure love to my lupus brothers and sisters to get active and love their bodies. I have been in the challenge only one week. I would be lying if I said it isn’t hard but I would also by lying if I said it wasn’t easy. I just do the best I can and give my body the TLC it needs. Don’t sell yourself short. You owe it to your body.

Feel free to follow my FitGirl journey on Instagram @gee_fitgirl. DM me with any questions regarding the program or my routine!

 

Peace, Love, and Butterflies,

Gladys Marie

How to: Write Letters to Potential Sponsors

Letter writing can be a scary process. The blank page combined with the desire to sound professional, educational (in case they have never heard of your cause), and sincere can be crippling for anyone trying to write their first of many sponsorship letters. Deep breath. We can’t all be Hemingway, so put that level of perfection from your mind right now.

Before you begin writing you need to know what you are asking for. Is it donations of food or beverages to sell at your booth during the walk? A monetary donation? Permission to post information in or around their building? Narrow this down and work from there. Much like a cover letter, you will want to hit the following three points:

• Who you are/your cause
• Why you have chosen them specifically to help you (do some research!)
• A personal story

However, keep in mind the number of letters you will be delivering/sending. This level of attention and time can not be devoted to 50+ potential sponsors (unless this is your actual job). You will want to complete a more general letter (see example below) to send in mass and save the more pointed letters for those who you think can/will donate in a big way.

 

EXAMPLE

DATE

Dear SPONSOR NAME:

Lupus remains under recognized, despite the fact that over 1.5 million Americans have lupus.  Lupus is a chronic autoimmune disease that can ravage any part of the body. Below is the personal story of YOUR TEAM NAME team captain(or whomever), NAME:

It was April 2012 and I couldn’t help but stare around the room. I paid close attention to every aspect of the room. Like the ugly burgundy carpet with tiny cream colored polka dots or the fake plant collecting dust in its leaves in the corner. I wanted to remember this room.

For almost a year, I had been searching for an answer. The answers were never there. Finally, the day came. I remember those tiny cream colored polka dots on the carpet blurring as they danced in my field of vision when the doctor said to me, “Your ANA test came back positive”. A positive Antinuclear Antibody test indicates that there is an autoimmune disease present in my body.

After more blood work, referrals, and an appointment with a specialist, I met my new fate on December 12, 2012. I didn’t care to inspect the room. I can’t tell you what the carpet looked like or the paintings on the wall, if any. But, I do remember my heart falling into the pit of my stomach when I heard the words, “It looks like you’ve got lupus”. Then, I crumbled.

There is no cure for lupus. It will never go away. I can’t take a magical pill or get a vaccine that will rid me of this daily burden I live with. My joints ache. My memory is dull. My skin is sensitive. My hair is thinning. My stomach is burning. My body is…exhausted.

The hardest part about lupus is not the ignorant medical professionals, insensitive family and friends, the constant blood work, or the consuming disease—it’s knowing that you will never have peace. I have accepted that I have lupus. I do not pity myself or the others because we are soldiers in this battle. I refuse to accept that I will never obtain peace. There will be a day when I will no longer feel any pain and I can live my life the way I have always dreamt of. But that requires you

Yes, I need you. I need to you to be aware of lupus and the damage it causes not only to the body but the soul. I need you to refuse to accept that there is no cure and demand adequate research and awareness. I need you to help change my life and the lives of millions of others. I need you to support my team, Purple Is The New Black, as we Walk To End Lupus Now in Boston.

We need you.

Thank You,

NAME

On DATE I will be helping the Lupus Foundation of America solve the cruel mystery of lupus, the world’s cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Funds raised through Walk to End Lupus Now support a comprehensive program of research, education, advocacy, and support. 

Every bit helps. Your donation will provide our team with a way to spread Lupus awareness to every person we encounter, not only on the day of the walk but every day after that we wear our team shirts we will be bringing Lupus awareness to the community.

Thank you for your support!

Sincerely,

NAME

CONTACT INFORMATION: Website, Email, Phone, Twitter, and Facebook

A few final tips: Keep your letter to a single page, include a deadline for them to get back to you, write a few drafts, have a friend proofread them, and don’t forget to follow-up about two weeks later if you haven’t heard back.

 

Check back for our blogs on saying thank you and how to team build, as well as an exciting post from Purple Is The New Black Team Captain, Gladys!

Happy Walking!

Purple Is The New Black

 

 

Finding Sponsors

 

Lupus.org

 

You have created your team and registered on lupus.org, what is your next step toward reaching your fundraising goals? Obtaining sponsors!

A few points possible sponsors will be considering:

1. How will this donation affect the company?
2. Will this association bring in more business or create a positive image?
3. Is the cause worthwhile?

• Sponsoring helps the company gets their name out in the community. This could drive more business their way or, in some cases, take business away.
• Sponsoring can make a large impersonal company seem more engaged and caring.
• It can also alienate customers who do not agree or support the same cause.
• Those the company selects to sponsor will affect the public image of the company (which is why careful consideration is necessary before a donation is made).
• Aligning themselves with those they sponsor helps the company more fully display their mission to the public.
• The nonprofits chosen by the company become a part of the above-mentioned mission—meaning that if something happens with either the non-profit or the company (good or bad) one can be directly associated to the other.

If you are a non-profit team hoping to obtain a few sponsors to help reach your fundraising goal, the best strategy might seem to be to call on as many local businesses as possible and see who will donate to your cause. However an alternate route to consider that could prove to be more effective is to sit down as a team and pool your resources. It is often best for companies to support causes that their employees either support or are directly involved in. See if anyone on your team has a connection. Then go around and make a list of sponsors your team would like to be associated with.

Because your walk is a local and you are a local team it would be best to consider businesses and companies in your immediate area, but be selective! Only chose businesses and companies you would be proud to advertise for during fundraising events and the walk because their name will most likely be included on your promotional material and even your team shirts (capes, hats, etc). This means researching the names on your list to make sure their mission aligns with that of your team.

When you have narrowed your list down to the best 15 options divide the outreach evenly amongst your team, unless you have nominated one specific member to be in charge of all sponsorship outreach (this might be best in the long run for organizational purposes). Collect the contact information. This might mean visiting your local businesses in person and inquiring about the best person to contact or for a larger company, simply search their website (or call) for that information. Craft a letter/email for each possible sponsor. Make this letter personal and full of information about the team, the walk, and what the donation will do to help. Keep the length relatively short (a single typed page) and do not forget to include your contact information (website, Facebook page, Twitter, phone, email, mailing address)! You want the make it as easy as possible for them to get back to you.

Now comes the part that can be a bit intimidating for some—following up. Do not be afraid to call after a reasonable period of time (say 10 days) to find out if they have received your letter and if they are interested. Remember to be polite in the face of possible rejection. This will say a lot about your team and burning the bridge will not help you in the future.

After the acceptances have come in gather with your team and come with a creative thank you! This can be in the form of a card signed by the entire team, a team photo, a small token of appreciation, or an invitation to meet you all at the walk. Be creative and have fun with it!

Remember that your team can raise money and be active participants in the walk without sponsors, but that sponsors are a great resource and can help you reach and even surpass the team fundraising goals.

The quick breakdown for obtaining sponsors:

1. Pool team resources
2. Find connections
3. Create a list
4. Research each possibility
5. Finalize 15 possible sponsors
6. Collect contact information
7. Craft a letter/email
8. Send letter/email
9. Follow up
10. Send a team thank you

Check back for an example letter/email to send and possible thank you ideas!

Happy Walking!

Purple Is The New Black

 

Happy Valentine’s Day!

This Valentine’s Day show someone with Lupus that you care by donating!

i carry your heart with me(i carry it in)

 

i carry your heart with me(i carry it in

my heart)i am never without it (anywhere

i go you go,my dear; and whatever is done

by only me is your doing, my darling)

                                                      i fear

no fate(for you are my fate, my sweet) i want

no world (for beautiful you are my world, my true)

and it’s you are whatever a moon has always meant

and whatever a sun will always sing is you

 

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life; which grows

higher than soul can hope or mind can hide)

and this is the wonder that’s keeping the stars apart

 

i carry your heart(i carry it in my heart)

—e.e. cummings

 

Taking the First Step

 

Your friend has asked you to join their Walk team.

You have always known that this friend’s life has been affected by __(Lupus, Cancer, Autism, etc.)___ and you have seen and maybe even donated to Walks like this one before, but can you be an actual team member? What do you do? How do you even help your team, fundraise, spread the word about the Walk, and most of all make people care?

This blog post is going to be a short and sweet about taking that first step.

1.       Decide what kind of team member you are going to be and  honestly relay that to your captain. Do you have the availability to lead fundraising efforts or are you more of a casual fundraiser with most of your energy going into making the day of the walk a success?

2.       Research your cause. You need to be prepared to answer any questions correctly and if you do not know the answer then have a few reliable sources ready to pass along.

The Walk is not just about fundraising; it is also about educating the public about something they may never have come in contact with before!

For example: What is lupus?

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

• Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.

• Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above. However, some treatments for lupus may include immunosuppressant drugs that are also used in chemotherapy.

• Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.

• Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

• Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.

• More than 16,000 new cases of lupus are reported annually across the country.

• It is believed that 5 million people throughout the world have a form of lupus.

• Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. Most people with lupus develop the disease between the ages of 15-44.

• Women of color are two to three times more likely to develop lupus than Caucasians.

• People of all races and ethnic groups can develop lupus.

This information was collected from lupus.org. Please visit to learn more about Lupus!

3.       Sign up! Create a dynamic profile that makes people want to donate to your cause, because this IS your cause now!