Special Awareness Issue

Transcription

1 August 26, 2010 In This Issue: September is Histiocytosis Awareness Month! Special Awareness Issue September Proclaimed Histiocytosis Awareness Month in Mantua, NJ HAA Volunteers Offer Great Awareness Ideas HAA Member Writes Poem About Histiocytosis to Help Raise Awareness September is Histiocytosis Awareness Month! September is right around the corner, and that means that people all over the country will be raising awareness about histiocytosis. Here at the HAA, we wanted to make it as easy as possible for you to join us in getting the word out about these rare diseases. We've got lots of ideas for ways you can participate in your own community. Be sure to check our awareness page on our website at for ideas to span the entire month. On September 10, we will all be wearing our histio bracelets and joining forces as a community of histio patients, families and loved ones to get the word out. If you don't already have a histio bracelet, visit our estore at and order yours today. On September 17, join us in wearing your favorite histio T-shirt. While you're out and about, see how many people ask you about it, and raise awareness by sharing with them your knowledge or your own personal story. T-shirts are also available in the estore. On September 24, wear your histio lapel pin and report back to us on how many people ask you about its significance. You can use our awareness kits all month long to raise awareness in your community. Awareness kits will be shipped starting August 27 so place your order today. These kits will include awareness cards, brochures, posters, balloons, pens and more! These kits will make it easy for you or your child to host an awareness table at your local craft fair, outside your grocery store, at your school or church - the possibilities are endless! We only ask that you cover the cost of the shipping and handling fees.

2 Also, for all of you Facebookers out there, we will be creating an awareness "event" on Facebook which you can "attend." This "event" will invite you to participate in awareness activities throughout the month and by "attending" you will be committing to raising awareness in your own community during the month of September. If you're not already, be sure to become our fan by clicking on the icon below and then the Like button so you get the "invitation." Then, send the invitation to all of your friends and family, inviting them to participate, as well. Let's see how many people we can get to come to our 'histio virtual event'! Be sure to check our awareness page and Facebook all month long for great ideas on ways you can help raise awareness about the histiocytic disorders and to learn more about the activities listed in this issue of HAA E-Newsletter, not only in the month of September, but all year round! September Proclaimed Histiocytosis Awareness Month in Mantua, NJ Jeff Toughill, HAA Executive Director, thanks the Mantua Township, NJ Mayor and Committee for passing a Proclamation declaring September 2010 as Histiocytosis Awareness Month. Jeff is urging that everyone from our rare community ask their local and state political bodies to also declare September as Histiocytosis Awareness Month. It's easy! Just download a draft of the resolution provided on the HAA website. If you know a local or state politician, simply call them, explain your story, and ask that they also pass a proclamation. If you do not personally know someone then write or call your local Mayor, Councilman or Committee person. You can also do this for your state by contacting your state representative. After your resolution is passed be sure to tell us so we can share your success with the histio community!! HAA Volunteers Offer Great Awareness Ideas We asked our volunteers to share their best ideas with us for Histiocytosis Awareness Month, and, in turn, we want to share them with you. These are fun and easy things that you can do right in your own community to raise awareness about histiocytosis. We will be featuring these ideas, as well as many others as they are received, on our website at so be sure to check there often throughout the month of September to see what other families around the country are doing and get some great ideas for you and your family. Chris in Ohio raises awareness by holding yearly fundraisers and purchasing histio items as gifts for people year round. This is a fabulous way to keep awareness high throughout the year and continuously educating the people around you. Dominique in California had her personal story published in a hospital's newsletter and then distributed copies of that newsletter to those around her. Leisa in North Carolina wears her histio pin and t-shirts, and also holds a yearly fundraiser where she raffles off histio items so that everyone in attendance is educated on the disease.

3 Sandra in North Carolina has a vanity plate on her car that says "CURE LCH" which raises awareness everywhere she goes! Tracy in Virginia has committed to wearing her histio t-shirt on September 17 with the rest of our histio community. Sarah in Indiana wears her histio bracelet all year round and has also partnered with her local bank which now keeps histio awareness cards on their counter. Thank you, everyone, for your fantastic ideas! If you have an idea that you'd like to share with us for possible inclusion on our website, please send it to awareness@histio.org and be sure to include a picture, if you have one. We are very excited about this year's Histiocytosis Awareness Month and hope you will join us in getting the word out in your own community. HAA Member Writes Poem About Histiocytosis to Help Raise Awareness HAA member and Facebooker, Bobbi Jo Kaufman, wanted to help raise awareness and get some of her own thoughts and feelings out. She decided that writing a poem was the perfect way to accomplish both. After writing the poem, entitled "Histiocytosis - A Rare Disease," Bobbi posted it on Facebook and began receiving many positive comments about it. We want to share that poem with you so you can use it in your own awareness activities during Histiocytosis Awareness Month. Bobbi dedicates this poem to her daughter, Brittany, and to all histio families. Published with permission by Bobbi Jo Kaufman. Histiocytosis - A Rare Disease Histiocytosis What is that? You may ask. It is a rare blood disease,

4 That destroys as it attacks. It can affect any part of the body, From skin, organ, blood, and bone. No one knows where it comes from, The cause is yet unknown. It acts just like a cancer, It'll take a life, you see. There is no simple answer, Oncologists are who you need. Chemotherapy, blood transfusions, Transplants, and steroids; These are treatments that are needed, And the patients can't avoid. We need to find a cure, To defeat this rare disease. But, without the proper funding, Our goals we'll never reach. Government won't fund it, Not one single penny. They say it's not that common, That it doesn't affect that many. We need doctors to do research, If we're going to find a cure. No one is immune from this, There's always more and more. Many have already lost their lives, And many more will, too. If we are going to change the outcome, It starts with me and you. Help us in our fight, Against Histiocytosis. Join our cause, give a donation, And pass on the awareness. I thank you for your help. It means so much to me. I know what it's like, first hand. My child has this rare disease.

5 Mailing Address: Histiocytosis Association of America 332 North Broadway Pitman, NJ US Contact Name: Kathy Wisniewski Telephone Number: (856)