Fight SMA Message Board

SMA and being skinny

alhofosho — Tue, 15 Sep 2009 00:34:22 GMT

My name is alex. im 15 years old and have SMA type II. after i had a spinal fusion, i lost weight and was never able to gain it back. i just cant seem to gain any weight. my doctor says that usually sma people are usually overweight. im not sure, if you have any input or ideas let me know!

The Jeffrey Journey/Special Dedication/Deadline!

HelenBaldwin — Tue, 08 Sep 2009 03:01:24 GMT

I am once again working on an update of The Jeffrey Journey and am sending a final reminder for names for this edition's special dedication.

I'm always taking names but need them for this edition by 9-15-09. If you don't read this until after that date, though, go ahead and send it! My computer crashed, putting me even farther behind than I already was; I will likely still be working on the revision at that time and will be happy to include as many names after that date as possible.

If you have a name to submit, all I need is the name as you would like it listed, including a nickname if desired, and whether it belongs in the 'honor' (living) or memorial section.

There are no restrictions regarding the dedication - number of names, dates, ages, location, type, etc. If you're the one with SMA, please submit your own name!

If you're not sure if you've submitted a name, feel free to ask me or check the online version of the dedication.

Thanks so much!

Helen

jeffreyb@skybest.com

Living with SMA

Chante860 — Thur, 08 Jan 2009 20:23:43 GMT

Hello FightSMA World !

My name is Chante and Im from New York. Im 16 years old living with SMA type III. When I began researching my disorder, I started to cry. Even while Im writing this Im begining to tear. Looking at all the young infants and toddlers dying from this disorders makes me so sad and wanting to help. I want all the parents to keep their head's up and fight SMA. With support we can all find anything to stop SMA. Living with this disorder makes me sad sometimes and I begin to get anxiety. I know its tough to live with It or your child Is suffering with this but all we can do is suppor & fight. Think Postitive & Stay Postitive. God is going to make way to find a cure but just have FAITH. I hope they find a cure for all types of SMA.

Please contact me by email : chanteharriotte@yahoo.com

IS THERE ANYONE THATS HAS SMA TYPE III ? PLEASE REPLY

SMA/stroke info?

HelenBaldwin — Thur, 18 Dec 2008 16:51:07 GMT

My primary purpose for writing is to ask if anyone has any information on SMA and strokes. Angie Wright (SMA 2) suffered a stroke in April and has given me permission to post to see if there is anyone else with SMA who has shared this whammy of a predicament. You can read about the stroke in the last entry in her journal - http://www.nof49.ca/angie/basicbio.html. Needless to say, the doctors are in a double quandary here, and to say she's feeling discouraged is a gross understatement. If anyone has experience and/or information about SMA and strokes, please send a note to Angie - angie@nof49.ca. Notes of encouragement would be most welcomed, too, especially since her 44th birthday is Sunday, Dec. 21!

While I'm here, I'd like to remind folks to submit a name for the special dedication in The Jeffrey Journey (for more info about the book, just ask!). I have received permission for over 1000 names in the next revision; this will help raise awareness that SMA is not quite as rare as most of us were led to believe, but it is just a small representation of this incredible family. If you have not yet submitted a name, please consider doing so. All I need is the name as you would like it listed, including a nickname if desired, and whether it belongs in the honor (living) or memorial section. If you have some sort of network with other SMA families, please share this, as no matter how hard I try, I will never be able to reach everyone myself! There are no restrictions, such as number of names submitted, dates, ages, location, and dont forget to submit your own name if applicable! Thanks so much.

Finally, I periodically email an update of SMA news, announcements, projects, helpful sites, etc., that might not reach folks otherwise. There is always so much going on! If you would like to be added to the list, just send your email address.

Happy, safe holidays and a terrific, healthy new year to all -

Helen

jeffreyb@skybest.com

2008 Dedication names - The Jeffrey Journey/newsletters

HelenBaldwin — Wed, 11 Jun 2008 13:26:25 GMT

Greetings! Im once again/still looking for names for the special dedication of The Jeffrey Journey, a book about our brief time with our baby, Jeffrey (whose 11th birthday we celebrated last month!). One section of the dedication honors those with SMA, while another serves as a memorial.

There are now over 1000 dedication names ready for the next printing, which will hopefully be the latter part of this year or the early part of 2009. It is quite an experience to read so many names in one place and to realize there are so many MORE.

There are no restrictions for submissions!!! Names have come from all over the world and include all ages and dates. Some families have sent several names.

If you would like to submit an entry to the dedication, all I need is the name as you would like it listed, along with a nickname if desired, and whether it belongs in the memorial or honor section. No other information is included.

Once a name is included in the dedication, its there for future revisions. If you are unsure as to whether or not you have already done this (or if a name needs to be moved to the memorial or changed otherwise), please dont hesitate to ask! Its easy to check, and some who assumed they had already submitted a name learned they hadnt. Also, be sure to check if youve had another child diagnosed within the past few years.

For more info about the dedication, book, or CD of original lullabies that accompanies the book, or to inquire about ordering, feel free to email me. You can read a little more about the book and listen to a few snippets of the CD at the web site (http://balderdashe.com/the-jeffrey-journey/index.html). I hope to take the site reigns from my brother before too long and update it in my quest to exercise my brain, if not my body!

Thanks again to all who have contributed to this ongoing 'community' project and for sharing this with other SMA families you know thru mailing lists, chapters, web sites, chats, etc). Your help is most appreciated!!!

Also, I have been trying to put my address book back together after its maddening disappearing act and finally got it together enough to send out an SMA 'stuff' update last week. If you usually receive one but didnt (and would like to), please let me know so I can send it and add you back to the list. Likewise, contact me if you've never received one but would like to begin. Someone suggested a blog to replace the updates, and as soon as my fellow SMA mom/partner in crime and I can figure out what were doing and when, thats one thing were aiming for in our upcoming venture. They say we need to learn new things in old age to keep our brains alert. My brain snickers at any project that even hints of dabbling in technology, but I AM an optimist

Happy, healthy summer to all, and thanks again! Helen Baldwin (jeffreyb@skybest.com)

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 (http://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

http://www.help-mikki.com

paula@centuryvanlines.com