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Purple Day does more than raise awareness of epilepsy.

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Presentation on theme: "Purple Day does more than raise awareness of epilepsy."— Presentation transcript:

1 Purple Day does more than raise awareness of epilepsy

2 Families bereaved by sudden death in epilepsy (SUDEP) share what Purple Day means to them.

3 Olly Mullin, age 31 Purple Day is a day of worldwide recognition and applause for each and every person living with epilepsy and their families; a day that strongly reminds us we are not alone with our epilepsy or its impact; a day of remembrance and celebration of the treasured lives of our loved ones lost to epilepsy; a nd, a day of shared hope, that we will someday come to better understand epilepsy and that we will succeed in reducing the number of lives lost to it. Tamzin Jeffs, Olly’s sister

4 Brian Joseph Elliott, age 14 Purple Day is a VERY important day for my family. My husband and youngest son live with epilepsy every day. It also is a day to honor my eldest son, Brian J Elliott, who passed away from a seizure on July 25, 2012. He was a unique young man, who loved baseball, The Beatles, John Lennon, his family, friends and his community!! He is sorely missed, and will ALWAYS be remembered on this day!! Colleen Elliott, Brian’s Mum

5 Nevaeh Danae Bishop, age 9 Purple Day means we are making an important step in bringing awareness and understanding to the gravity of epilepsy. This gives the opportunity to bring public attention to the possibility of SUDEP occurring. SUDEP is a terrifying thought, but with this fear comes enlightenment. I would rather have been informed of SUDEP, than to have been left feeling like we had been kept in the dark on something so important. Natassia Feather, Nevaeh’s Mum

6 Dana Frost, age 31 My life was forever changed on December 30, 2008 when I lost my only child, daughter Dana, age 31, to SUDEP. For me, Purple Day represents hope that through research one day, hopefully very soon, epilepsy will be better understood and a cure will be found. No parent should ever have to experience the pain of losing a child. Maria Frost, Dana’s Mum

7 Purple Day is important because it is bringing awareness to epilepsy. Most people don't know how serious it really is. Knowledge is important. The more you know, the better you can understand it. Rachelle Comer, Tyler’s Aunt & Roberta’s Niece Roberta Jenkins, age 33 Tyler Comer, age 13

8 Jamie Van Nostrand, aged 30 Purple Day helps us to know we are not alone in our sorrow, and not alone in our loss. A quiet hug goes round the world and offers comfort no words can ever express. Anne Van Nostrand, Jamie’s Mum

9 Chelsea Tobin, age 23 Purple has become a way to celebrate our daughter’s life and memory, as well as to raise awareness of epilepsy. We wear it every day. We share our loss and encourage those living with epilepsy, including our other daughter, to educate themselves and do everything they can to reduce their risk. Purple Day is just one day of the year. Epilepsy needs to come out of the shadows all year long. It’s a tragedy that we learnt about SUDEP too late. Wendy Tobin, Chelsea’s Mum

10 Lisa Montanera, aged 25 We were so relieved to learn, after her first seizure, that Lisa’s epilepsy was mild and “benign”….. easily controlled with medication. She saw her neurologist regularly, complied with instructions on medications and lifestyle, and her seizures all but disappeared. We thought Lisa was safe….. her condition just a minor inconvenience. We were very wrong. Our beloved daughter and sister Lisa died suddenly in her sleep on January 18, 2012 at the age of twenty-five. If someone like Lisa is at risk, so is everyone with epilepsy. Purple Day draws attention to, and advocates for, research and funding to solve the mystery of SUDEP. Mary Lou, Walt, Mike, Chris and Dan Montanera

11 Tyler Stevenson, age 20 Purple Day is international recognition that epilepsy is real and it impacts millions of lives worldwide. Purple Day is also a day to remember my 20-year old son Tyler who passed away from SUDEP in January 2011. On March 26th, as we recognize those who live and who have died from epilepsy, it is important to understand the impact to the individuals and families affected and the many challenges that they face each and every day. Purple Day is only one day a year, but epilepsy lives and breathes every day of the year and it will take awareness and advocacy to bring about an understanding of, and hopefully a cure for, this often unspoken medical disorder. Mark J Stevenson, Tyler’s Dad

12 Julian B Veyna III, age 27 Purple Day is a day we particularly remember Jay’s huge smile and all the joy he brought to our lives. We miss him every day!! Arlene Rightsell Jay’s Mum

13 Keely Marie Shields, age 23 Keely was larger than life and people were drawn to her. Her grace, laughter and light brought joy to others. Her favorite color was purple and Purple Day makes us feel closer to her as it reminds us of her funeral, where the majority of over 1,000 people who gathered to honor her life wore purple. Although epilepsy (SUDEP) claimed her in the end, she never let it define her and she lived a rich, fulfilling life. Sue Shields, Keely’s Mum

14 Jordan Fawcett, age 15 On Purple Day we will wear our ‘purple’ proudly to honour those living with epilepsy, and to help create awareness of SUDEP. Our ‘purple’ will shine brightly in memory of our beautiful daughter Jordan, whose life was mysteriously and tragically taken at age 15 to SUDEP. It is our hope through raising awareness that we can help save other families from having to endure the pain we must live now. God, bless those who need you, and hold those we have lost safely in your arms until we can hold them in ours again. Deb & Dave Fawcett, Jordan’s Parents

15 Traci Cleverley Pink, age 39 My wife Traci Cleverley Pink lived with epilepsy from a young age, but she never let it dominate her life. Considering that her seizures were largely controlled through medication, her death from SUDEP in November 2011 at the age of 39 came as an utter shock. Hers was a compassionate, generous soul and she left a large hole in our community. I pray for the day when no one suffers the devastating loss of a family member from SUDEP, and thank the organizers of Purple Day and the SUDEP Aware team for continuing to spread awareness about epilepsy and SUDEP. Doug Cleverley, Traci’s Husband

16 Rick Berg, age 47 April will mark three years since I lost my partner Rick Berg to SUDEP. Not a day goes by that I don't miss him or think about what he is missing in not being here with his family and friends. I hope that, through the efforts of raising awareness of epilepsy worldwide, we are able to unlock some of the mysteries of this condition and help prevent premature death in others. Love and miss you RB. Martha Bennett, Rick’s Partner

17 Being informed of ALL the risks associated with epilepsy and working with your healthcare provider to prevent seizures is the best way to reduce the risk of death from epilepsy. Please help by sharing this message with your family and friends living with epilepsy. For more information about SUDEP: For more information about Purple Day: Please help to raise awareness of epilepsy and SUDEP by wearing purple this Purple Day and by helping to encourage its discussion

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