| |
 |
|
|
Who We Are
|
|
|
|
|
|
|
|
|
|
|
|
|
The Story of the Starfish
|
|
|
|
|
|
The following is a story from “Chicken Soup for the Soul” and is illustrative of the spirit of our members.
One at a Time
A friend of ours was walking down a deserted Mexican beach at sunset. As he walked along, he began to see another man in the distance. As he grew nearer, he noticed that the local native kept leaning down, picking something up and throwing it out into the water. Time and again he kept hurling things out into the ocean.
As our friend approached even closer, he noticed that the man was picking up starfish that had been washed up on the beach and, one at a time, he was throwing them back into the water.
Our friend was puzzled. He approached the man and said, “Good evening, friend. I was wondering what you are doing.”
“I’m throwing these starfish back into the ocean. You see, it’s low tide right now and all of these starfish have been washed up onto the shore. If I don’t throw them back into the sea, they’ll die up here from lack of oxygen.”
“I understand,” my friend replied, “but there must be thousands of starfish on this beach. You can’t possibly get to all of them. There are simply too many. And don’t you realize this is probably happening on hundreds of beaches all up and down this coast. Can’t you see that you can’t possibly make a difference?”
The Local native smiled, bent down and picked up yet another starfish, and as he threw it back into the sea, he replied, “Made a difference to that one!
Jack Canfield and Mark V. Hansen
The local native is like the members of the Registry because he did not say; “there is nothing I can do because I don’t have the money.” He did not say, “I can not make a difference because I am not powerful.” He did not say, “I can not do this because I don’t have enough friends to help.” Instead he made the most of what he had, his own spirit and energy and he made a difference in the ways that he could make a difference. This is what so many of our members do. In presenting this list of people an accomplishments we applaud each and everyone for the spirit and passion they bring to the cause of helping people with chromosome 18 abnormalities become the most that they can.
The following is a story from “Chicken Soup for the Soul” and is illustrative of the spirit of our members.
One at a Time
A friend of ours was walking down a deserted Mexican beach at sunset. As he walked along, he began to see another man in the distance. As he grew nearer, he noticed that the local native kept leaning down, picking something up and throwing it out into the water. Time and again he kept hurling things out into the ocean.
As our friend approached even closer, he noticed that the man was picking up starfish that had been washed up on the beach and, one at a time, he was throwing them back into the water.
Our friend was puzzled. He approached the man and said, “Good evening, friend. I was wondering what you are doing.”
“I’m throwing these starfish back into the ocean. You see, it’s low tide right now and all of these starfish have been washed up onto the shore. If I don’t throw them back into the sea, they’ll die up here from lack of oxygen.”
“I understand,” my friend replied, “but there must be thousands of starfish on this beach. You can’t possibly get to all of them. There are simply too many. And don’t you realize this is probably happening on hundreds of beaches all up and down this coast. Can’t you see that you can’t possibly make a difference?”
The Local native smiled, bent down and picked up yet another starfish, and as he threw it back into the sea, he replied, “Made a difference to that one!
Jack Canfield and Mark V. Hansen
The local native is like the members of the Registry because he did not say; “there is nothing I can do because I don’t have the money.” He did not say, “I can not make a difference because I am not powerful.” He did not say, “I can not do this because I don’t have enough friends to help.” Instead he made the most of what he had, his own spirit and energy and he made a difference in the ways that he could make a difference. This is what so many of our members do. In presenting this list of people an accomplishments we applaud each and everyone for the spirit and passion they bring to the cause of helping people with chromosome 18 abnormalities become the most that they can.
|
|
|
|
|
|
|
|
|
Making a Difference (2008-2009)
|
|
|
|
|
|
Unique Ways to Give
-
Nova Mae Post is the daughter of David and Kim Post who live in Bennington, VT. Nova Mae has Tetrasomy 18p and just turned three in January 2010. Nova's mom operates Nova Mae Cafe next to her "Junque" shop in downtown Bennington. In 2009, Kim held a most creative fundraiser. To raise awareness of chromosome 18 abnormalities, especially tetrasomy 18p, and The Chromosome 18 Registry, Kim spent a good deal of her time "sharing" Nova Mae and talking about The Registry. To help raise funds for the Registry, she left out a jar for donations and also pledged a percentage of every cup of her special coffee sold during the year. The impressive total of this unique fundraiser has been sent to the Registry and will be just one more way our families push forward research to help our children and adults with chromosome 18 changes.
Ten Top Tea Totallers:
- Sydney Alper, 18q-. Daughter of Eric & Allison Alper, Dix Hills, NY.
- Alanna Buchanan, 18p-. Daughter of Pete & Kathy Buchanan, Holliston, MA.
- Kaylyn Earl, 18p-. Daughter of Jeff & Kristen Earl, Kalamazoo, MI.
- Sammie Flowe, Tetrasomy 18p. Daughter of Ben & Peg Flowe, Potomac, MD and Carol & Connor & Jeffrey Cohen, Bethesda, MD.
- Evan Gorrell, 18p. Son of Jason & Melanie Gorrell, Greenwood, IN.
- Lane Hobby, 18p-. Son of Steve & Becky Hobby, Savannah, GA.
- Zoe LaFrombois, Tetrasomy 18p. Daughter of Benjamin & Cathy LaFrombois, Black Mountain, NC.
- Ally Mazur, 18q-. Daughter of Jeff & Lisa Mazur, Amherst, NH.
- Riley Odem-Griffice, 18q-. Daughter of Sylvia Odem & Simon Eastwood and Robert Griffice and Lee Anne Landry, Austin, TX.
- Remy Schilly, 18q-. Daughter of Dan & Katie Schilly, Olathe, KS.
Individual Fundraisers, July 2008 through 2009:
- Harpers Choice Swin Team (2009) by Friends of Sean McGing, Columbia, MD (Tetrasomy 18p).
- Jewel Food Percentage (2009) by Eric & Cindy Josefson, Round Lake Heights, IL (Son: Eric, 18q-/Trisomy 3).
- Usborne Books Open House (November 2009) by Jason & Melanie Gorrell, Greenwood, IN (Son: Evan, 18p-).
- Applebee's Dining to Donate (October 2009) by Jason & Melanie Gorrell and Thomas & Laury Koppel, Greenwood, IN (Children: Evan Forrell, 18p-, and Trevor Koppel, 18p-).
- Yankee Candle Sale (September 2009) by Natalie Abreu-Horne and Shelby Griffin, Tampa, FL (Children: Logan Horne, 18q-, and Alex Griffin, Tetrasomy 18p).
- Bake Sale (September 2009) by Paul & Deb Ammann, Johnstown, NY (Son: Kevin, 18q-).
- Ziemer Cookout (September 2009) by Dione & Brett Ziemer, Sherwood, AR (Son: Dallas Perez-Ziemer).
- Botello Lumber Company Golf Tournament (August 2009) by Stephen Botello, Mashpee, MA (Sons: Cameron & Joshua, 18q-).
- Conference Fundraiser (2009) by Anita & Deven Wagner, Las Vegas, NV (Daughter: Kiana, Ring 18).
- Yankee Candle Sales (December 2008) by Sal & Sue Bentivenga, Ellicott City, MD (Daughter: Jessica, 18q-).
- Charity Mania for Football (October 2008) by Calvin & Michelle Brewster, Thurmont, MD (Daughter: Karson, 18q-).
- PB's Rock 'N Run (April 2009) by Catherine Burzio, Berryville, VA (Daughter: Pauline, 18p-).
- Basketball Game (July 2009) by Scott & Cara DeMoss, Sullivan, ID (Son: Camden Wayland, Tetrasomy 18p).
- Jewelry Sales (July 2009) by Susan Shaffer, Bristol, PA (18q-).
- Bunco Party (2009) by Richard & Stacey Gallardo, Moorpark, CA (Daughter: Amelia, Tetrasomy 18p).
- Pampered Chef Party (March 2009) by Jason & Melanie Gorrell, Greenwood, IN (Son: Evan, 18p-).
- Walk/Run (November 2008) by Danielle Hainley, Greenwood, IN (Son: Evan, 18p-).
- School Fundraiser by Evan Kaminer, Jericho, NY (Friend: Sydney Alper, 18q-).
- Cookie Bake Party (December 2008) by Jeanne & Jonathan Koehler, Lansdale, PA (Son: Kyle, 18p-/Trisomy 3p).
- Adirondack Paddlefest by friends of Rodney & Jill Lee, Boonville, NY (Son: Owen Lee, Tetrasomy 18p).
- Golf Outing (November 2008) by Rodney & Jill Lee, Boonville, NY (Son: Owen Lee, Tetrasomy 18p).
- Dutch Dash by John & Monica McDivitt and David & Tam Aldrup, et al., Katy, TX (Children: Samantha McDivitt, 18q-, and David Aldrup, mosaic Tetrasomy 18p).
- Online Fundraiser (2008) by Gordon & Lorraine Peruzzo, Weston, Ontario (Daughter: Kaitlyn, mosaic Tetrasomy 18p).
- Run for Reis (2008) by Tracy & Todd Sims, Las Vegas, NV (Son: Reis, 18q-).
- 3 Strikes for Sean (November 2008) by Robert & Jennifer Tavernier, Carol Stream, IL (Son: Sean, 18q-).
- Conference Fundraiser (2009): Anita & Deven Wagner
Unique Ways to Give
-
Nova Mae Post is the daughter of David and Kim Post who live in Bennington, VT. Nova Mae has Tetrasomy 18p and just turned three in January 2010. Nova's mom operates Nova Mae Cafe next to her "Junque" shop in downtown Bennington. In 2009, Kim held a most creative fundraiser. To raise awareness of chromosome 18 abnormalities, especially tetrasomy 18p, and The Chromosome 18 Registry, Kim spent a good deal of her time "sharing" Nova Mae and talking about The Registry. To help raise funds for the Registry, she left out a jar for donations and also pledged a percentage of every cup of her special coffee sold during the year. The impressive total of this unique fundraiser has been sent to the Registry and will be just one more way our families push forward research to help our children and adults with chromosome 18 changes.
Ten Top Tea Totallers:
- Sydney Alper, 18q-. Daughter of Eric & Allison Alper, Dix Hills, NY.
- Alanna Buchanan, 18p-. Daughter of Pete & Kathy Buchanan, Holliston, MA.
- Kaylyn Earl, 18p-. Daughter of Jeff & Kristen Earl, Kalamazoo, MI.
- Sammie Flowe, Tetrasomy 18p. Daughter of Ben & Peg Flowe, Potomac, MD and Carol & Connor & Jeffrey Cohen, Bethesda, MD.
- Evan Gorrell, 18p. Son of Jason & Melanie Gorrell, Greenwood, IN.
- Lane Hobby, 18p-. Son of Steve & Becky Hobby, Savannah, GA.
- Zoe LaFrombois, Tetrasomy 18p. Daughter of Benjamin & Cathy LaFrombois, Black Mountain, NC.
- Ally Mazur, 18q-. Daughter of Jeff & Lisa Mazur, Amherst, NH.
- Riley Odem-Griffice, 18q-. Daughter of Sylvia Odem & Simon Eastwood and Robert Griffice and Lee Anne Landry, Austin, TX.
- Remy Schilly, 18q-. Daughter of Dan & Katie Schilly, Olathe, KS.
Individual Fundraisers, July 2008 through 2009:
- Harpers Choice Swin Team (2009) by Friends of Sean McGing, Columbia, MD (Tetrasomy 18p).
- Jewel Food Percentage (2009) by Eric & Cindy Josefson, Round Lake Heights, IL (Son: Eric, 18q-/Trisomy 3).
- Usborne Books Open House (November 2009) by Jason & Melanie Gorrell, Greenwood, IN (Son: Evan, 18p-).
- Applebee's Dining to Donate (October 2009) by Jason & Melanie Gorrell and Thomas & Laury Koppel, Greenwood, IN (Children: Evan Forrell, 18p-, and Trevor Koppel, 18p-).
- Yankee Candle Sale (September 2009) by Natalie Abreu-Horne and Shelby Griffin, Tampa, FL (Children: Logan Horne, 18q-, and Alex Griffin, Tetrasomy 18p).
- Bake Sale (September 2009) by Paul & Deb Ammann, Johnstown, NY (Son: Kevin, 18q-).
- Ziemer Cookout (September 2009) by Dione & Brett Ziemer, Sherwood, AR (Son: Dallas Perez-Ziemer).
- Botello Lumber Company Golf Tournament (August 2009) by Stephen Botello, Mashpee, MA (Sons: Cameron & Joshua, 18q-).
- Conference Fundraiser (2009) by Anita & Deven Wagner, Las Vegas, NV (Daughter: Kiana, Ring 18).
- Yankee Candle Sales (December 2008) by Sal & Sue Bentivenga, Ellicott City, MD (Daughter: Jessica, 18q-).
- Charity Mania for Football (October 2008) by Calvin & Michelle Brewster, Thurmont, MD (Daughter: Karson, 18q-).
- PB's Rock 'N Run (April 2009) by Catherine Burzio, Berryville, VA (Daughter: Pauline, 18p-).
- Basketball Game (July 2009) by Scott & Cara DeMoss, Sullivan, ID (Son: Camden Wayland, Tetrasomy 18p).
- Jewelry Sales (July 2009) by Susan Shaffer, Bristol, PA (18q-).
- Bunco Party (2009) by Richard & Stacey Gallardo, Moorpark, CA (Daughter: Amelia, Tetrasomy 18p).
- Pampered Chef Party (March 2009) by Jason & Melanie Gorrell, Greenwood, IN (Son: Evan, 18p-).
- Walk/Run (November 2008) by Danielle Hainley, Greenwood, IN (Son: Evan, 18p-).
- School Fundraiser by Evan Kaminer, Jericho, NY (Friend: Sydney Alper, 18q-).
- Cookie Bake Party (December 2008) by Jeanne & Jonathan Koehler, Lansdale, PA (Son: Kyle, 18p-/Trisomy 3p).
- Adirondack Paddlefest by friends of Rodney & Jill Lee, Boonville, NY (Son: Owen Lee, Tetrasomy 18p).
- Golf Outing (November 2008) by Rodney & Jill Lee, Boonville, NY (Son: Owen Lee, Tetrasomy 18p).
- Dutch Dash by John & Monica McDivitt and David & Tam Aldrup, et al., Katy, TX (Children: Samantha McDivitt, 18q-, and David Aldrup, mosaic Tetrasomy 18p).
- Online Fundraiser (2008) by Gordon & Lorraine Peruzzo, Weston, Ontario (Daughter: Kaitlyn, mosaic Tetrasomy 18p).
- Run for Reis (2008) by Tracy & Todd Sims, Las Vegas, NV (Son: Reis, 18q-).
- 3 Strikes for Sean (November 2008) by Robert & Jennifer Tavernier, Carol Stream, IL (Son: Sean, 18q-).
- Conference Fundraiser (2009): Anita & Deven Wagner
|
|
|
|
|
|
|
|
|
|
|
|