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For Alzheimer’s Action Day, Sept. 21, 2012: Launch of E-book of “What My Grandma Means to Say”

September is World Alzheimer’s Month, with September 21 designated as Alzheimer’s Action Day.

To mark the day and the month that increase awareness about Alzheimer’s disease and related forms of dementia, General Store Publishing House (www.gsph.com) launched the e-book of “What My Grandma Means to Say,” JC Sulzenko’s storybook for children in grades 3 – 6 and families, in which someone is living with Alzheimer’s.

“The timing is deliberate,”says JC. “By making the storybook available in a form that is accessible across Canada and world-wide, I hope that families affected by Alzheimer’s disease use the story of Jake and his grandma to launch a positive discussion with their children about dementia. Rather than avoiding conversations about challenges such diseases bring to the lives of families and the children in them, I encourage families to take the big step: use “What My Grandma Means to Say” to build understanding and strategies that support the person living with the disease and each other.

“Children often are drawn into the role of caregivers. They need the chance to find their place in the life of their family as relationships change with the progress of the disease.”

The e-book, which can be ordered through Kindle, Kobo, Sony, Barnes and Noble, as well as independent e-book retailers, completes the cycle which began in 2009 with JC’s ten-minute, one act play for children “What my grandma means to say.” The play’s script is contained in the Discussion Guide for teachers, now available in downloadable format FREE from this website, along with FAQS, sources of further information, activities for the classroom and home and a bibliography. A performance of the play by high school students can be screened on this website, as well.

“I still believe the experience of reading “What My Grandma Means to Say” is most effective when family members hold the actual storybook in their hands. Sitting together, feeling the book in their hands, brings them closer as they, through the story, learn about Alzheimer’s and what they can and cannot hope for as they deal with how the disease affects the life of someone about whom they care.

“I’m a realist, though: the e-book has the potential to many more families in such situations than a hard copy of the book. I am thrilled with the way General Store Publishing House adapted the original book for e-readers. I hope families and children benefit from “What My Grandma Means to Say” wherever they are and whenever they find themselves in such a situation.”

The 48-page storybook, first published in 2010 and illustrated by Gary Frederick, is available from General Store Publishing House (1 800-465 6072) www.gsph.com at a retail cost of $12.95. The book includes answers to frequently asked questions and lists sources of further information.

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Five-Star Review of “What My Grandma Means to Say” on About.Com

JC welcomed a five-star review by Susan Adcox on About.Com.
Here are some excerpts from the review which can be found at http://grandparents.about.com/od/bookswithgrandparents/fr/What-My-Grandma-Means-To-Say.htm:

“Although children can’t have Alzheimer’s, millions of children suffer from it, as they watch beloved grandparents descend into dementia. Other family members may struggle to explain what is happening. Help is at hand with this book, which tells the story of Jake, his mom and his grandmother, who sometimes needs Jake to explain What My Grandma Means to Say.

“Written by Canadian author JC  Sulzenko and published by General Store Publishing House, the book is a high-quality paperback. Not exactly a chapter book, it is divided into readable chunks. A dozen or so illustrations by Gary Frederick add charm.

“It wouldn’t be accurate to say that this is the first book for children with Alzheimer’s in their family… What sets this book apart is the voice of the narrator, a voice which author Sulzenko said pushed her out of the way when she began writing the play. In addition, few books for children have factual material of the breadth of that which Sulzenko includes.

“Just so that you won’t be caught unawares, the informative nature of What My Grandma Means to Say does not negate its emotional wallop. It’s a rare reader who won’t shed a few tears before the final page.”

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On this Website Soon: the updated Discussion Guide for “What My Grandma Means to Say,” the Play

Within the next weeks, the Discussion Guide for teachers and community leaders, which complements JC’s play for children about Alzheimer’s disease, will be available in downloadable PDF form from this website.

“This updated version will be user-friendly and interactive with direct links to organizations and sources  that can be helpful to families, teachers and healthcare workers,” JC notes.

The Discussion Guide contains the script of the one-act, ten-minute play, along with information on how to stage it and how to lead a discussion based upon “What My Grandma Means to Say.” Answers to FAQs, helpful websites and books, as well as suggested activities for the classroom, at home and during visits with someone who is living with Alzheimer’s disease also can be found in the Guide.

“Once the Guide is available on-line, I hope that more people who are facing the challenges posed by Alzheimer’s in the family will be able to make use of such information, ” JC noted.

The e-book of the storybook published by General Store Publishing House will follow by the autumn. Remaining hard copies of the book are still available from the publisher (www.gsph.com)and from Chapters/Indigo and Amazon Canada.

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Verses just published in Florida: JC’s Poem Targets Industrial Wind Farms’ Threat to Species at Risk in Ontario

The May 11 issue of The Island Sun, the weeklypaper on Sanibel Island, Florida, carries verses from JC’s Line-a-Day poem at www.jcsulzenko.com (for mature readers). Using the tanka form, JC’s observations in “Spectacle” begin with watching a fox at the shore. The focus then moves to the destruction of sensitive habitats and species at risk, particularly birds such as the Whip-Poor-Will and Loggerhead Shrike, posed by plans to site almost 40 wind turbines, each up to 400 feet high, in an area which carries the international designation as an Important Birding Area (IBA.) Read these verses in Don Brown’s Poetic Voices column on page 38 at: www.islandsunnews.com/Read_the_Island_Sun.pdf.

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Capital Parent profiles “What My Grandma Means to Say,” the video

In the March/April issue of Capital Parent Newspaper appears a great feature on the YouTube video of the pilot performance of “What My Grandma Means to Say.” The paper is available free at Ottawa-area newsstands and also can be read on-line at  http://server14a.pressmart.net/capitalparent/index.aspx Go to page 6 to read about the play.

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JC’s interview about the new video on Channel 22, February 6

Daytime, a talk show on Channel 22 in Ottawa featured an interview with JC on Monday February 6. The show aired from 11AM-12 noon, at 5:00 PM and at 11: 00 PM. Here’s the link to the interview: http://www.rogerstv.com/page.aspx?lid=237&rid=4&gid=90689. The co-hosts explored with JC how the new video of a performance of the play “What My Grandma Means to Say” by high school students for elementary school-aged children enables both age groups to discuss Alzheimer’s disease. To screen the new video of the play, see below.

 

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One-hour Internet Radio Feature on “What My Grandma Means to Say” January 17, 1:00 p.m (EST)

On Tuesday, January 17, at 1:00 p.m. (EST)  Dr. Gordon Atherley from Toronto interviewed JC  to learn how “What My Grandma Means to Say”, the play and the storybook, can enable family discussions about Alzheimer’s disease and related forms of dementia.   Here is the link to the broadcast on VoiceAmerica:
http://www.voiceamerica.com/episode/58907/what-my-grandma-means-to-say.

Dr. Atherley invited JC to come on his program after reading one of her articles in the national media about the importance of including children in family discussions when someone in that family is living with Alzheimer’s disease. So often, families find it very difficult to speak among themselves about what is happening to someone about whom they care.  So often, the need of children to understand their place in such a situation is not given attention by health care providers.

The discussion was far-ranging and included the important perspective offered by Kristen Irvine, a professional personal care worker who is very involved in supporting her own grandmother who is living with Alzheimer’s disease.

Having education programs in schools that focus on Alzheimer’s and the use of “What My Grandma Means to Say” in training health care providers were some of the issues which arose during the discussion.

At the site for the program is an e-mail address for comments on the broadcast which Dr. Atherley welcomes.

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Canadian Authors Association Panel, January 10

JC participated in a panel on January 10 that focussed on marketing and promotion but gave her the chance to talk about how she came to write “What My Grandma Means to Say.” Here is the link to executive member Arlene Smith’s blog on what struck her about JC’s comments. www.scienceandstory.wordpress.com

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CAA Evening Panel: Tuesday, January 10, 2012

JC joins Sharyn Heagle, President, Ottawa Branch of the Canadian Authors Association,  Emily-Jane Hills Orford and Dave Mullington for a ‘get your hands dirty’  panel: The Do’s and Don’ts of Marketing your work.

After brief presentations from each panellist, Sharyn will broker a discussion among them about issues they have addressed —  what works and what doesn’t — in promoting what they have written. A question and answer session with audience participation will follow.

A great way to get and share tips.

In the auditorium, Main Branch, Ottawa Public Library (See the CAA, Ottawa Branch, website for details.)

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Season’s Greetings

A time for reflection about 2011 and wishes from JC for a happy New Year, one filled with poetry, creativity, hope and good health.

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The Board of The Glebe Centre Welcomed JC’s Reading of “What My Grandma Means to Say”

JC was pleased to accept the invitation Lawrence Grant, Executive Director of The Glebe Centre, extended on behalf of the organization’s Board of Directors, to give a dramatic reading of the play on November 28.

JC confirmed to the Board how the Glebe Centre partnered on “What My Grandma Means to Say” from when it was first being test-read in 2009, through the development of a Discussion Guide for teachers, the premiere of the play at the Ottawa International Writers Festival in 2009 and the publication of the storybook adaptation in the spring of 2011. She expressed her particular gratitude to Jen Dare, Pat Goyeche and Karen Joynt for their support throughout the evolution of the project. Most recently Abbotsford hosted a tea for healthcare professionals and for educators to demonstrate how the book and the play can enable families and children discuss Alzheimer’s disease and related forms of dementia and can help them develop strategies to support someone they know who is living with such diseases.

Members of the Board were touched by the play and posed a number of questions after the presentation. One Board member asked whether JC had thought of writing about what happens as Alzheimer’s disease progresses, with a focus on the end of life.  JC had not considered that but would.

She advised the board that junior students at her recent reading at Hopewell Avenue Public School had encouraged her to write about other diseases. When JC asked which ones they thought she should target, here were some of their suggestions: diabetes, cancer and ALS.  The fact that these children between the ages of 8 and 12 already have such illnesses on their radar screens proved to JC how important it is for families to include children in conversations when such situations affect the life of a family.

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Welcome Winter Delights a Sell-out Crowd on November 26

A full house turned out for the fourth annual reading of “A Child’s Christmas in Wales” by Dylan Thomas at  Glebe-St. James United Church on Saturday, November 26! Many members of the audience spoke to JC after the performance with wonderful comments and pleas that the tradition of presenting this unique story to herald the holiday season continue for many years to come.

Rob Clipperton returned as the gifted storyteller. At this performance, Rob was surrounded by student actors and singers of the Hopewell Avenue Public School Junior Choir. Dressed in PJs and slippers, these students from Grades 4,5 and 6 had speaking parts from the story and sang seasonal songs that picked up on the themes of “A Child’s Christmas in Wales.” The program began with an evocative organ solo by Robert Palmai, Minister of Music at Glebe-St. James  which Marya Woyiwada, Soprano, followed with an aria from Die Fledermaus. Canterbury High School’s Vocum, women in the vocal music program at Arts Canterbury, who were directed by James Caswell, left the audience spellbound with their music.

JC thanked the talented performers and musicians for lending their presence to the show, Glebe-St. James United Church for hosting Welcome Winter, volunteers who assisted at the event and Compact Music for advance ticket sales.

Net proceeds (over $ 2300) from the one-hour of performance, presented by JC and Allison W0yiwada, benefit Reach Canada (www.reach.ca) this year.

 

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Capital Parent Newspaper Features JC’s Article in October/November Issue

Just noted:  Please go to http://server14a.pressmart.net/capitalparent/index.aspx to find JC’s article, “Children have a place in the Alzheimer’s picture.”

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JC Appeared at Two Schools for the Ottawa International Writers Festival, Fall 2011 Edition

JC presented “What My Grandma Means to Say” over 100 students from grades 3 and 4 at Bayview Public School in Ottawa on November 9,2011. After reading from the book and explaining how she adapted the play into story form, JC welcomed questions that covered aspects of Alzheimer’s disease as well as the process of writing she uses. Student participation was great and the questions very thoughtful. She enjoyed her first visit to the school thoroughly.

On November 10, JC returned to Hopewell Avenue Public School and met 200 students from grades 3-7 who were crammed into the Library. This enthusiastic group was interested in talking about writing. Several students encouraged JC to write  a series which could address other diseases. When she asked which ones, they came up with a strong list: diabetes, cancer, ALS and polio were raised.  JC explained to the students how she had launched her first book for children, “Annabella and The TyCoon” in their library thirteen years ago and that the book raised over $2000 for the music program at the school. She also told them that the poem which she wrote which has gone through the most number of drafts was based on an experience she had leading a workshop for Hopewell students during with she met Alice Erwin, an amazing young woman who touched her deeply. “Beholder” is probably my favourite poem,” JC admitted. When asked which of her six books for children she likes the best, she suggested that the question was rather like asking a mother which of her children she likes best. Impossible to answer.

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New Website for Grandparents: a feature on JC’s book and article

Check out this brand-new website for Grandparents that profiles “What My Grandma Means to Say” and reprints JC’s article from City Parent (Toronto). http://thegrandparentsguide.com/tag/alzheimers/

It’s great that talking with kids about Alzheimer’s is featured there. Hope that families who could use the book  learn about it  this way.

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JC’s article as part of Vancouver Province’s coverage of dementia

In a special supplement on Alzheimer’s disease and dementia, the Vancouver Province gave my article today a place of prominence. Check it out: http://www.theprovince.com/health/Essay+Children+need+brought+into+Alzheimer+conversation/5472978/story.html

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Line-a-day Poetry Project Extended for Another Year

The Line-a-day Poetry Project began in October 2010, on this site under the “for Mature Readers” tab. JC imagined the challenge as an opportunity to distill into one line some element from her daily experience.  It was both surprising and not to her that the project took a different road than she had foreseen. Instead of lines of free verse linked to one another, at least in chronology if in no other way, stanzas emerged. First haiku; then tanka forms dominated. JC often used the repetition of a word or related subject matter from one stanza to another to enable the flow of her ideas.

While, JC admits she  found herself impatient, at times, for this commitment to write for a year to end, the anniversary date passed without her notice. When she realized the year was over, instead of sighing with relief, she felt regret. So she has decided to continue the process for another year without any preconceived notion of whether the lines will follow the pattern set to date or not.

JC welcomes comments on the Line-a-day Project on this site.

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“What My Grandma Means to Say” at the Ottawa International Writers Festival, October 20, 2011

Here’s the link to the special ’roundtable’ event  which was presented with Mother Tongue Books as part of this autumn’s edition of the Ottawa International Writers Festival. http://www.writersfestival.org/events/what-my-grandma-means-to-say-with-jc-sulzenko.

The downpour-afternoon did not dampen enthusiasm for this topic. The conversation was wide-ranging. It went beyond a focus on how families develop ways in which to support each other and the person they know who is living with dementia.  The importance of music and visual art for people living with Alzheimer’s, new treatments and research, and personal experiences also were raised.

Thanks to Laura and Evelyn at the bookstore and to Caitlin Brydges from The Alzheimer Society of Ottawa and Renfrew County for their contributions to the event.

The Festival will also sponsor JC’s visits to a number of area schools in early November.

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“What My Grandma Means to Say” in performance October 5 and 6 in Prince Edward County Elementary Schools

Here is the link to an excellent article from Prince Edward Collegiate Institute writers about “What My Grandma Means to Say,” the play, which was performed for 8-12 year-olds at three County elementary schools on October 5. The troup travelled to three more schools on October 6.

With the guidance of PECI head of drama and native studies,  Matt Sheahan, students from that high school take on the roles of Jake, Grandma, Jake`s mother and the nurse for the ten-minute play, which kick-starts a discussion about Alzheimer`s disease.

This initiative represents an innovative community partnership between the school and the Alzheimer Society of Prince Edward County. It gives effect to JC`s vision to have senior students perform for younger ones so that both groups can grow their understanding about dementia and develop strategies to support someone they know who may be living with it. http://countylive.ca/blog/?p=18033&cpage=1#comment-28719

For PECI website coverage, go to http://edu.hpedsb.on.ca/peci/index.php?option=com_content&view=article&id=664:drama-presentation&catid=38:news&Itemid=225

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Interview on September 18 on CFRA 580 Talk Radio

Rabbi Bulka interviewed JC for an hour-long segment of his Sunday night talk show. Here’s the link to listen in on their conversation about “What My Grandma Means to Say”. On the target page, select the September 18 show.

Rabbi Bulka with JC Sulzenko

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JC’s Article in Fall Issue of Healthwise Ottawa in Time for World Alzheimer’s Day, September 21, 2011

A three-page feature on “What My Grandma Means to Say” appears in the fall issue of Healthwise Ottawa, “Your local guide to improved health and well-being.” The story traces how “What My Grandma Means to Say” developed from a play into a storybook for children and families in which someone is living with Alzheimer’s disease or a related dementia and overtook JC’s writing life.

Healthwise is delivered to home subscribers of the Ottawa Citizen in selected areas. 40,000 copies of each issue are published.#Alzheimers healthwiseottawa.ca/wp-content/upl…

 

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September 12:High Tea for health care professionals and educators in Ottawa about “What My Grandma Means to Say”

Photo by Lois Siegel

On Monday, September 12 from 4:00-5:30 p.m., the Glebe Centre hosted a sumptuous High Tea to introduce area educators and health care professionals to “What My Grandma Means to Say,” the storybook and the play for children and families about Alzheimer’s disease.  Those attending the event had the opportunity to see first hand how “What My Grandma Means to Say”  (in both drama and storybook forms) enables children and families in which someone is living with Alzheimer’s disease or a related dementia to discuss how to handle the challenges such conditions pose. Over forty professionals attended the tea at which representatives of The Glebe Centre and the Alzheimer Society of Ottawa and Renfrew County spoke about the use of the material in their work and at which JC Sulzenko gave a dramatic reading of the play.

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What My Grandma Means to Say reviewed in Resource Links

Here are some of what Resource Links writes for schools and libraries about the book in a recent on-line issue : “Through the first person narrative, Sulzenko draws us into Jake’s inner journey. This book would serve as an excellent stepping-off point for discussions about dementia as a health issue that affects families.”

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JC performed “What My Grandma Means to Say” at ASORC Volunteer Appreciation Event on June 13

On Monday, June 13, the Alzheimer Society of Ottawa and Renfrew County (www.alzheimer-ottawa-rc.org ) held its annual event in appreciation of the efforts of all its volunteers. JC gave a brief introduction to the play and the storybook. She then presented “What My Grandma Means to Say,”  the play, to volunteers, Board members and staff of ASORC. (In the photo, taken by Debbie Seto: left to right – Kelly Lumley-Leger, JC and Caitlin Brydges.) Afterwards, she had an opportunity to chat with many guests and received a very positive response to the reading. Among those honoured that afternoon were people who had volunteered with the organization for over twenty years. JC salutes all the volunteers who assist families and persons living with Alzheimer’s disease and related dementias.

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JC at ArtsPark with impromtu poetry

JC wrote poems for a loonie or toonie as part of the ARC Poetry Factory at ArtsPark in Hintonburg on May 29. To read the story in the Ottawa West EMC, go to:http://www.emcottawawest.ca/20110602/news/Residents+turn+out+in+support+of+ArtsPark. And see this about a poem for the foodies twosome:http://www.foodieprints.com/item/3735?pending=1#pending. And this link to Pearl’s photos:http://www.flickr.com/photos/pearlpirie/5771522555/in/pool-20543830@N00

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JC on Daytime on Rogers Cable 22, Thursday, June 2 11:00 a.m. till noon

JC appeared on Rogers TV for an interview about “What My Grandma Means to Say,” the storybook just launched at the Ottawa International Writers Festival. JC divulged first-hand what drove her to write about Jake and his grandmother, how the story emerged first as a play, and how it evolved  in storybook form.

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Poetry Chapbook Launched on Sunday, June 5

JC is a member of the Ottawa CAA poetry circle, Licence to Quill, which launched its first chapbook, Tangled Strands, at Collected Works last Sunday. The subtitle, “Combing the Muse,” says it all: every poem has something to say about hair ! Contributing poets are: Carol A. Stephen, Lesley Strutt, JC Sulzenko, Rona Shaffran, Laura Etherden, Donald Officer, Elise Hynes. JC’s poems,”Joy Waiting” and “En route,” appear in the collection. Copies of Tangled Strands are available at Collected Works, 1242 Wellington at Holland, in Ottawa or from JC.

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Book Signing and Reading at Collected Works Bookstore: Sunday, June 5,1242 Wellington at Holland

Here’s another chance to meet JC and buy a signed copy of What My Grandma Means to Say. JC will be at Collected Works Bookstore 1242 Wellington at Holland on Sunday, June 5, from 1:30-2:30 PM to talk about and sign copies of What My Grandma Means to Say. Come by and chat with JC.


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JC Addressed Wedgewood Authors Series in Brockville

On May 25, JC drove to beautiful Brockville on the St. Lawrence River and spoke at the Wedgewood Authors Series about her experience with What My Grandma Means to Say. She described how she came to write the one-act, ten-minute play for children and how that experience led her to writing the storybook adaptation of the play. She also explained how the play and book are valuable educational tools for families and children. She gave interviews for local media through Series organizer Doreen Barnes and met representatives from the Alzheimer Society of Leeds-Grenville and from public libraries in the area. The Alzheimer Society has purchased copies of What My Grandma Means to Say for each library in the region. “Making copies available at libraries and in schools is exactly the kind of response I hoped the book would receive, ” JC commented. “I am most grateful for the interest shown by the Alzheimer Society in the book and the play.”

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JC’s book launched on May 1 at the Ottawa International Writers Festival

The Ottawa International Writers Festival Spring Edition www.writersfestival.org featured the launch of  “What My Grandma Means to Say”  at Collected Works Bookstore on Sunday, May 1.  JC spoke of how she came first to write the one-act play about eleven year-old Jake and his grandmother who is living with Alzheimer’s disease and then of the journey that led her to  capture Jake’s whole story in the book and to seek funding for a video production of the play for use in schools and by community groups. Check out interviews in The Orleans Star http://www.orleansstar.ca/News/Local/2011-05-04/article-2477816/Explaining-Alzheimer%26rsquo%3Bs-in-a-storybook/1?action=sendToFriend, Metroland’s Ottawa This Week http://www.yourottawaregion.com/news/article/999686–children-s-book-sheds-light-on-mystery-of-alzheimer-s and on Nightcap on EZ ROCK  (99.7 FM) at http://www.ezrock.com/NightCap.aspx.


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