Fight SMA Message Board

The Jeffrey Journey - dedication names

HelenBaldwin — Fri, 21 Sep 2007 00:57:26 GMT

Greetings to all! Many hugs for birthdays, new babies, and exciting accomplishments; even bigger hugs for new diagnoses, new angels, angel anniversaries, surgeries, and all the tough decisions that come with SMA. Ive tried to keep up, although the chaos of life has kept me from writing much lately. Some may be relieved :)

As always, I am looking for names for the special dedication in The Jeffrey Journey. For those who dont know about the book, it is based on notes I kept during our brief time with our third baby (Jeffrey) and is accompanied by a CD of lullabies my mother wrote for him. One of my favorite parts of the book is the special dedication, with one section honoring those with SMA and another serving as a memorial. It is quite an emotional experience to see so many names in one place - there are already over 1000 for the next printing.

I cannot reach every SMA family myself, so if you keep up with other SMA families individually or thru a website, chapter, mailing list, fundraiser, etc., PLEASE pass this on or share my e-mail address with them. Admittedly, there may be a bit of obsession mixed in with the passion by now, but I do want to include as many family members as possible and am hopeful the efforts will in some way help contribute to raising awareness.

If you would like to submit a name for the dedication, all I need is the name as you would like it listed, including a nickname if desired, and whether it belongs in the honor or memorial section. No other information is necessary. Once a name is included in the special dedication, it will remain in all future printings, although changes can and will be made as necessary. If you are unsure whether or not you have submitted a name, dont hesitate to ask - its easy to check. Some have assumed I have already listed their name(s), but unless I have received permission, the first name or initials only are listed in a third section. There are no restrictions for the dedication regarding age, date, location, number of names, etc.

Information about the book is located at balderdashe dot com/the-jeffrey-journey/index dot html. My brother has fixed a link to a few samples of the music, too! The book/CD is still $26 with minimal postage (and tax if in NC). Please contact me (jeffreyb at skybest dot com) for more information and/or ordering.

A final note - I send out an occasional e-mail newsletter with quite a few SMA sites, announcements, etc., I think might be helpful in some way. If you didn't receive one this week and would like to be placed on the list, just let me know! Thanks, Helen

SMA Treatment Acceleration Act

HeatherLennon — Fri, 17 Aug 2007 16:51:24 GMT

We are very pleased to announce that legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, H.R. 3334, "The SMA Treatment Acceleration Act", has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA). U.S. Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA) plan to introduce companion legislation in the Senate when Congress returns from its August district work period. On behalf of our organizations and the families affected by this deadly disease, we want to express our gratitude and thanks to Congressmen Kennedy and Cantor and Senators Stabenow and Isakson for their leadership.

SMA is the number one genetic killer of children under the age of two. It is an inherited disease that destroys the nerves controlling muscle movement, which affects crawling, walking, head and neck control, swallowing, and even breathing. Approximately one in 40 people, or approximately 7.5 million Americans, carry the gene mutation that causes SMA. Each child of two carriers of the mutant gene has a one in four chance of being afflicted by SMA.

Among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health (NIH) as the disease closest to treatment based on scientists' advanced genetic understanding of the disease and a strong collaboration between families, federal agencies, and patient advocacy groups. Researchers have identified the gene responsible for SMA, as well as a disease modifying "back-up" gene that has opened the door to promising new treatment pathways. Research involving the modulation of genes stands to benefit not only SMA, but other genetic disorders, including Duchenne Muscular Dystrophy, Parkinson's, and Alzheimer's. In recent Congressional testimony by the NIH, it was noted that "research on SMA illustrates the path from gene to understanding to treatment."

In order to build on the progress being made by investigators and bring treatments to children affected by SMA, a broad coalition of organizations, including FightSMA, Families of SMA, and the SMA Foundation, has united behind The SMA Treatment Acceleration Act, legislation aimed primarily at supporting a national clinical trials network for SMA.

Specifically, "The SMA Treatment Acceleration Act" provides for the following:

Federal support for a national clinical trials network for SMA;
Federal support to enhance the existing SMA patient registry and for expanded research on the epidemiology of SMA;
Establishes an SMA Coordinating Committee to include federal agencies, SMA researchers, and SMA families, which shall study barriers to development of SMA treatments;
Establishes a trans-Institute research collaboration at NIH under the Director to ensure that all relevant Institutes are contributing and collaborating on SMA research;
Requires the Secretary of the U.S. Department of Health and Human Services (HHS) to study and report to Congress on the use of incentives to promote SMA drug development among private industry;
Provides for the Secretary of HHS to establish a program to provide information and education on SMA to health professionals and the general public

Our organizations will be issuing a "Nationwide Call to Action" for all SMA families, researchers, and friends, to help engage every Member of Congress in support of the this bill and the great efforts of Congressmen Kennedy and Cantor and Senators Stabenow and Isakson.

Sincerely,

Cynthia Joyce	Kenneth Hobby	Martha Slay
SMA Foundation	Families of SMA	FightSMA

NOTE: If you have any questions, please feel free to contact any one of our Government Affairs staff:
Laura Breiteneicher	Spencer Perlman	Caroline Gibson
SMA Foundation	Families of SMA	FightSMA
laurab@wswdc.com	spencer@fsma.org	carolinegibson@fightsma.com

Looking to meet people

lord08ball — Mon, 06 Aug 2007 00:45:18 GMT

My wife and I are raising a beautiful 4 year old daughter that has SMA type II, as every family dealing with this we are plagued with dissappointments in treatment, knowledge, and financial help for this. We are looking around trying to find people in similiar situations to talk with and children that are around same age as our daughter to possibly visit in time and help her understand as time goes on.

Greenville Gathering Update!

kanga1102 — Sat, 09 Jun 2007 21:53:11 GMT

Hi all!

One more note to remind everyone to make their reservations for the Greenville Gathering! You have until July 19th to make your reservations. After that, all unreserved rooms will be released to the general public and the rates will go back up to their usual rate ($249 per night).

I had an exciting meeting with Jester Entertainment earlier this week. This is the same company we had last time, and you all remember what fun they were! Well, they've come up with some amazing ideas for this year, and I hope you'll all be there to experience it.

Menu selection is humming along. If you already have your reservations and have any special requests for the dinner, please write directly to me. We're planning a big dinner on Friday night as well as a "Meet and Greet" breakfast for local doctors and members of the press. This is our chance to make a big impact on the doctors in this area, so let's take it!

The rest of the weekend is still being planned, but Doddie has graciously offered to organize a trip to a local Arabian horse farm, my husband is trying to get together a list of interested people for a golf outing, and the Burgers have offered boat rides at their lake house. We're trying to allow lots of unstructured time so people can just be together and
enjoy downtown Greenville.

Once you make reservations, please contact me so I can add your group to my head count for dinner. If you have any questions about the Gathering, please email me directly at kpax@charter.net

Hope to see you all there!

:) Andrea

New Couple

nwse — Fri, 01 Jun 2007 09:30:56 GMT

My name is Robet and I am engaged to Michelle.

I am in the Army and love Michelle with all my heart. I proposed to her on the Seattle Space Needle Jan 4, 2007. We met online and talked to eachother for about a year before seein eachother. 6 months later she moved from ga to live with me. We are planning on a long engagment and to be married for a year or two before we start to have any kid(s).

My fiancee Michelle has SMA type III. She is a very kind person. She is also a very independent person and loves helpin other people. She is goin to college to become a social worker to help others in need.

We are a new couple as you see. I don't know much about sma but would love to learn more. I would like to be more informative and have more questions answered. Her and I both don't know what is held in the future for us but we still plan for the best and always look forward to having a family of our own (3 dogs, 2 cats, 5 birds, and 2 kids). we look to have a very fulfilled life.

Formation of new area group

momdoyle6 — Wed, 23 May 2007 13:19:29 GMT

I live in Murrieta,ca and there are absolutley NO support groups in our area, we are very interested in having something created,and am willing to do the work,if anyone feels the need for such a thing in a reasonable area,please send me a message,it is urgent to get support going out here.,and maybe someone has some hints or advise on getting something going.I would really appreciate some feed back.

New Fighter Mom website

HeatherLennon — Fri, 11 May 2007 20:44:21 GMT

Hello everyone! I hope that you are all well. Happy Mother's Day to all the mothers.

I just wanted to make sure that you knew about the new Fighter Mom website and online community. You can reach the site from the FightSMA homepage (www.FightSMA.org). I encourage all of you to explore this new interactive community where you can post blogs, forums, events, pictures, etc.

Enjoy!

Double diagnosis

kandjmom — Fri, 11 May 2007 04:05:52 GMT

Hello everyone -

I'm Kari, the mother of 2 beautiful daughters diagnosed with SMA. Kennedi is 2 1/2 and was diagnosed shortly after her 2nd birthday with SMA type II. Jaycie is almost 5 months and was diagnosed shortly after 3 months. We opted to have the genetic testing done right away for her so we weren't second guessing ourselves. They are unsure what type she will have, but are leaning towards the type II since that's usually the trend. Two SMA diagnosis in less than 6 months is overwhelming and heart breaking :( We are learning to deal with this day by day and some days are better than others. I'm looking for some other parents who are in the same position for some support, conversation, guidance and just to lend an ear to each other. Hope to hear from some of you soon .

Kari :)

Greenville Gathering!

kanga1102 — Wed, 04 Apr 2007 16:14:05 GMT

Has anyone made reservations yet for the Greenville Gathering? I need to keep a running tab on the number of rooms and the number of people coming so that I can make sure we meet our contractual obligations to the hotel and so that I know how much food to order for the welcome dinner. If you've made reservations, please email me directly at kpax@charter.net and let me know ow many rooms you rented and how many people are in your party. If you haven't made reservations yet, please remember to email me later once the reservations have been made.

If you want more information about the Gathering, let me know and I'll email you the information.

Thanks!

:) Andrea
kpax@charter.net

Parents of SMA Children

pnaftali — Mon, 19 Mar 2007 23:51:08 GMT

My daughter Mikelle was diagnosed in 2005 with SMA TYPE I. She will be 3 in September. Just want to leave my email address for anyone who has any questions. Or you can view her website

www.help-mikki.com

paula@centuryvanlines.com

2007 Greenville Gathering!

kanga1102 — Wed, 28 Feb 2007 23:55:41 GMT

Please join us in Greenville for an SMA Family Gathering!

-------------------------------------------------

Friday, August 10th through Monday, August 13th
(three nights - the 10th, 11th and 12th)

at

The Westin Poinsett, Greenville, SC

http://www.starwoodhotels.com/westin/property/overview/index.html?propertyID=1255

The Poinsett has given us a steep discount off of their regular rates - rooms are only $125 per night

Call (864) 421-9700 for reservations. Be sure to ask for the SMA Family Gathering rate.

** When making reservations, be sure to verify parking garage clearance for your vehicle **

There will be dinner and entertainment on Friday night, as well as several group activities scheduled. Details to follow.

Can't stay the whole time? Come whenever you can and leave whenever you need to!

Questions? Feel free to call me any time!

Once you make your reservations, please email me with the number of people attending as well as the number of rooms you reserved so I can add you to the Guest List. If you need to cancel, please let me know that as well so I can make adjustments.

This Gathering is not affiliated with any organization - I just want to see everyone again!

Feel free to forward this invitation to any SMA family!

:) Andrea Smith
kpax@charter.net
(864) 845-8816

The Jeffrey Journey - availability

HelenBaldwin — Mon, 29 Jan 2007 14:52:04 GMT

I will have copies of the latest edition of The Jeffrey Journey around the middle of February. In an effort to keep this post brief, if you would like ordering info, whether you're actually ready to order or not, I'll be happy to send it to you if youll e-mail. It may also be ordered now through Trafford Publishing (www.trafford.com/robots/03-0953.html). You may read a little about it and hear a sample of the music on the accompanying CD at balderdashe.com/the-jeffrey-journey/index.html. The book (with CD) is $26, with minimal postage.

Also, I have already started taking names for the special dedication in the next revision of the book and am asking for your help in spreading the word! For newcomers unfamiliar with this project, the book is based on notes I kept during the short time with our baby (Jeffrey, Type 1) and has a special dedication, with one section honoring those with SMA, and another serving as a memorial. All I need is the name as it should be listed, along with a nickname if desired, and whether the name belongs in the honor or memorial section. There are no restrictions - this is for all families who have dealt with any form of SMA at any time, anywhere, any number of times. Please share this request with others, particularly new families with whom you might be in contact! It is quite an emotional experience to read the names, which number about 1000 now.

Thanks so much for your help - Helen

Final request for dedication names!

HelenBaldwin — Wed, 27 Sep 2006 22:04:43 GMT

Greetings to all and, as usual, prayers to those with new angels or particularly tough circumstances. Congratulations to those with birthdays and other reasons to celebrate!

This is a final request for names for the dedication in the upcoming revision of The Jeffrey Journey. For newcomers, the book is about our brief time with our baby Jeffrey (Type 1) and is accompanied by a CD of the music my mother wrote for him. The books special dedication has one section honoring those with SMA and another serving as a memorial. There are almost 1000 names now, and Id like more to help spread awareness that SMA is prevalent enough to warrant serious attention. If you are interested in submitting a name, send the name as you would like it listed, along with a nickname if desired, and whether it belongs in the honor or memorial section. No other information is needed, and there are no restrictions regarding number of names, location, age/date, etc. Please share this request with other SMA families! I would like to have the names by October 10. Names will be taken at any time after that date and will be included until the revisions are ready to be sent to the publisher; after that, they will be held for the next revision.

If you would like to receive an occasional e-mail update about the book and others SMA news and projects, etc., please let me know. If you are receiving them and want to stop, please let me know that as well.

Finally, a big thanks to those who have responded to my daughter Katies request for info about school/education accommodations! If anyone else is interested, the focus of her senior paper/presentation is the creativity required for adapting the educational environment for children with Type 1 and weak Type 1 (all ages, past and present). Some families with Type 3 children have also sent notes, and she may very well be able to incorporate them, so if you and/or the school have come up with some ways to facilitate your childs (or your own) education, please share! She will make the paper available at some point for anyone interested. She will be doing a power point, so any working pictures, whether in school or at home, would be greatly appreciated. Information should be e-mailed within the next few days if at all possible.

As usual, thanks so much for your help!

Helen Baldwin
P.O. Box 964
Jefferson, NC 28640
jeffreyb@skybest.com

8TH Annual Hannah's Buddies

Sunnydaze — Fri, 08 Sep 2006 05:00:52 GMT

Is there a date set for the next Hannah's Buddies? Where do I go for information on this? Thanks.

The Jeffrey Journey/Operation Oprah update

HelenBaldwin — Sat, 05 Aug 2006 19:06:50 GMT

Greetings to all! Many prayers for those with new angels and that the particularly difficult challenges are easing up; many hugs to those celebrating new little ones, birthdays, graduation, college, appearances in the media, successful fundraisers, and more!

Here are a few updates for The Jeffrey Journey and Operation Oprah to help break in this new message board :)

For those of you wondering who I am (since I dont often post on any SMA boards), I am the mother of an SMA angel, Jeffrey. I wrote a book - The Jeffrey Journey - about our brief time with him; its accompanied by a CD of the soothing lullabies my mother wrote for her very special last grandchild.

Included in the book is a special dedication, with one section honoring those with SMA and another serving as a memorial. Those sections together are closing in on 1000 names, and Im begging for more for the next update. One of the purposes for the book is to help spread awareness; the more names there are, the more evident it should be that SMA isnt quite as rare as the medical experts lead most of us to believe. A third section of the dedication (in which only first names or initials are listed until I receive permission) has hundreds more names.

If youre interested, all I need is the name as you would like it listed, including a nickname if desired, and whether it belongs in the honor or memorial section. No other information is necessary. There is NO LIMIT whatsoever - if you have more than one name to submit, send them! This is for anyone with any form of SMA, anywhere, any age/year. I would like to have the new names in place as soon as possible, preferably by the end of September (I am an optimist!).

I am also asking/begging for help in getting the word out about this request! Some of you have shared with your chapters or SMA circles, and it is greatly appreciated. Despite my efforts, which can border on the obsessive, I am unable to locate more than a fraction of the names or contact info of those who could be a part of this project. Please share this request and my e-mail address:
1. If you head a chapter or chat or participate in one and/or are active in an SMA-related forum;
2. If you have a site with a message board, guest book, or other way to share announcements. If youd like me to post a brief request, I'll be happy to do so if you'll send the link;
3. If you keep in touch with SMA families or those who might come into contact with SMA families off-line in any way, for any reason (as friends, thru clinics, studies, etc.).

Dont assume I already have any particular name! Many e-mails are returned for one reason or another - some spam-catchers think Im spam and refuse to let the e-mails through, some addresses arent valid, some e-mail boxes are full - so many folks know nothing about this request. Also, there have been so many SMA projects requesting names and/or pictures, some folks have assumed theyd already donated names for the book when they hadnt.

If you arent absolutely positive you have given me a name (or names), do not hesitate to ask! Its easy to check, and Im happy to do it.

ALSO, there is a section of resources in the book; if you have a good resource youd like to share, send it on!

It is exciting to report that Karen Gaseni has read The Jeffrey Journey and has expressed an interest in translating it into Spanish at some point in the NOT-so-near future! Karens studying translation in college and will be slightly submerged in class requirements for a while(!), but we are thrilled with the idea of a translation at any time.

2. Operation Oprah - Remember that project?!? There are nine completed albums of pictures, stories, letters, and more submitted by many of you for Oprah and her staff. As soon as I thought it was finished, more items drifted in, and since I still need to add them, Im opening it up again with some modifications. If you would like to be a part of this project, please send a hard copy of a picture of your child, spouse, sibling, self to me at the address below (if you live outside the US, you may e-mail your submission). Please include the name of the person in the picture, age or birthdate, angel date if applicable, and your name and e-mail address if the picture is a child. If you have a website, feel free to add that, too, along with any special news or notes. If you'd like to send a letter or story, that's fine, too! I will fix the album page for the picture/letter or whatever, but it will help tremendously if its ready to go straight to the page.

I have sent The Jeffrey Journey and two letters, along with a copy of Elizabeth Gearharts Victorious Life about Victor Alvarez (egearhartatblankrr.com) to one of Oprahs senior producers. The purpose is not to promote the book(s) as much as it is to promote this extraordinary SMA family, but the books should serve as good introductions. I will be sending a third letter to the producer soon and have decided to send a sample album with some of the gorgeous pictures and the items prepared especially for Oprah so she can see for herself why a segment, if not an entire show, should be devoted to SMA!

If you have any questions about the book (dedication, availability, etc.) and/or Oprah projects, please ask!

I have just sent out a mass e-mail update (with info about other projects, etc.) to a LOT of folks. If youve been receiving them in the past and didnt receive one yesterday or today, please let me know, as it may have been returned for some reason. If youve never received one but would like to, Ill be happy to add you to the list!

Finally, to those of you who included our family in your prayers when I recently requested them on behalf of my father, thank you so very much. Dad passed away at the end of June, peacefully and with our entire family right with him. Our Jeffrey lessons, always fresh, were put to use in a big way; the similarities between the two assignments were so striking at times, it made some aspects tougher, others a bit easier. It will take a while to get my act more fully together, but we have enjoyed the signs that Papa is fine... and some that indicate he and Jeffrey are making up for lost time

Thanks so much for your help!

Helen (Baldwin) - P.O. Box 964 - Jefferson, NC 28640
jeffreyb@skybest.com