This measure would proclaim September 30, 2017, and each September 30th thereafter, as Limb Girdle Muscular Dystrophy (LGMD) Annual Awareness Day.

This measure would proclaim September 30, 2017, and each September 30th thereafter, as Limb Girdle Muscular Dystrophy (LGMD) Annual Awareness Day.

This measure would proclaim September 30, 2017, and each September 30th thereafter, as Limb Girdle Muscular Dystrophy (LGMD) Annual Awareness Day.

WHEREAS, Limb Girdle Muscular Dystrophy (LGMD) is a rare disease that is known to cause muscle weakness and wasting; and

WHEREAS, LGMD most commonly affects muscles closest to the body, known as proximal muscles, specifically the muscles of the shoulders, upper arms, pelvic area, and thighs; and

WHEREAS, LGMD is not one disease, but a group of hereditary, genetic, neuromuscular disorders with more than 25 subtypes currently identified; and

WHEREAS, LGMD occurs among all ethnic groups, affects both males and females, and can begin in childhood, adolescence, or adulthood; and

WHEREAS, LGMD is a progressive, serious, and debilitating condition that has a significant impact on the lives of those affected; and

WHEREAS, Individuals and families affected by LGMD often experience problems like diagnosis delay, difficulty finding a medical expert, and lack of access to treatments and ancillary services; and

WHEREAS, Research is ongoing and important advances are being made every day in understanding the genetic causes for the disease, but there is still no known cure or treatment; and

WHEREAS, While the public is familiar with some rare diseases, like amyotrophic lateral sclerosis (ALS), and are sympathetic to those affected, many patients and families affected by LGMD bear a large share of the burden of raising public awareness to support the search for treatments; now, therefore, be it

Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature hereby proclaims September 30, 2017, and each September 30th thereafter, as Limb Girdle Muscular Dystrophy Annual Awareness Day; and be it further

Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.

WHEREAS, Limb Girdle Muscular Dystrophy (LGMD) is a rare disease that is known to cause muscle weakness and wasting; and

WHEREAS, LGMD most commonly affects muscles closest to the body, known as proximal muscles, specifically the muscles of the shoulders, upper arms, pelvic area, and thighs; and

WHEREAS, LGMD is not one disease, but a group of hereditary, genetic, neuromuscular disorders with more than 25 subtypes currently identified; and

WHEREAS, LGMD occurs among all ethnic groups, affects both males and females, and can begin in childhood, adolescence, or adulthood; and

WHEREAS, LGMD is a progressive, serious, and debilitating condition that has a significant impact on the lives of those affected; and

WHEREAS, Individuals and families affected by LGMD often experience problems like diagnosis delay, difficulty finding a medical expert, and lack of access to treatments and ancillary services; and

WHEREAS, Research is ongoing and important advances are being made every day in understanding the genetic causes for the disease, but there is still no known cure or treatment; and

WHEREAS, While the public is familiar with some rare diseases, like amyotrophic lateral sclerosis (ALS), and are sympathetic to those affected, many patients and families affected by LGMD bear a large share of the burden of raising public awareness to support the search for treatments; now, therefore, be it

Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature hereby proclaims September 30, 2017, and each September 30th thereafter, as Limb Girdle Muscular Dystrophy Annual Awareness Day; and be it further

Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.

WHEREAS, Limb Girdle Muscular Dystrophy (LGMD) is a rare disease that is known to cause muscle weakness and wasting; and

WHEREAS, LGMD most commonly affects muscles closest to the body, known as proximal muscles, specifically the muscles of the shoulders, upper arms, pelvic area, and thighs; and

WHEREAS, LGMD is not one disease, but a group of hereditary, genetic, neuromuscular disorders with more than 25 subtypes currently identified; and

WHEREAS, LGMD occurs among all ethnic groups, affects both males and females, and can begin in childhood, adolescence, or adulthood; and

WHEREAS, LGMD is a progressive, serious, and debilitating condition that has a significant impact on the lives of those affected; and

WHEREAS, Individuals and families affected by LGMD often experience problems like diagnosis delay, difficulty finding a medical expert, and lack of access to treatments and ancillary services; and

WHEREAS, Research is ongoing and important advances are being made every day in understanding the genetic causes for the disease, but there is still no known cure or treatment; and

WHEREAS, While the public is familiar with some rare diseases, like amyotrophic lateral sclerosis (ALS), and are sympathetic to those affected, many patients and families affected by LGMD bear a large share of the burden of raising public awareness to support the search for treatments; now, therefore, be it

Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature hereby proclaims September 30, 2017, and each September 30th thereafter, as Limb Girdle Muscular Dystrophy Annual Awareness Day; and be it further

Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution.

Date of Hearing: September 1, 2017

ASSEMBLY COMMITTEE ON RULES

Ken Cooley, Chair

SBPCA Bill Id:SCR 67

Author:(Anderson) – As Introduced Ver:

SENATE VOTE:

SUBJECT: Limb Girdle Muscular Dystrophy Awareness Day

SUMMARY: Proclaims September 30, 2017, and each September 30th thereafter, as Limb Girdle Muscular Dystrophy (LGMD) Annual Awareness Day. Specifically, this resolution: makes the following legislative findings:

1. Limb Girdle Muscular Dystrophy (LGMD) is a rare disease that is known to cause muscle weakness and wasting and most commonly affects muscles closest to the body, known as proximal muscles, specifically the muscles of the shoulders, upper arms, pelvic area, and thighs.
2. LGMD is not one disease, but a group of hereditary, genetic, neuromuscular disorders with more than 25 subtypes currently identified. LGMD occurs among all ethnic groups, affects both male and females, and can begin in childhood, adolescence, or adulthood.
3. LGMD is a progressive, serious, and debilitating condition that has significant impact on the lives of those affected. Research is ongoing and important advances are being made every day in understanding the genetic causes for the disease, but there is still no known cure or treatment.
4. Individuals and families affected by LGMD often experience problems like diagnosis delay, difficulty finding a medical expert, and lack of access to treatments and ancillary services.
5. While the public is familiar with some rare diseases, like amyotrophic lateral sclerosis (ALS), and are sympathic to those affected, many patients and families affected by LGMD bear a large share of the burden of raising public awareness to support the search for treatments.

FISCAL EFFECT: None

REGISTERED SUPPORT / OPPOSITION:

Support

None on file

Opposition

None on file

Analysis Prepared by: Nicole Willis / RLS. / (916) 319-2800

 THIRD READING 

Bill No: SCR 67

Author: Anderson (R)

Introduced: 6/28/17

Vote: 21

SUBJECT: Limb Girdle Muscular Dystrophy Awareness Day

SOURCE: Carol Abraham, Founder, LGMD Awareness Day

Neil Kramer, constituent

DIGEST:

This resolution proclaims September 30, 2017, and each September 30th thereafter, as Limb Girdle Muscular Dystrophy (LGMD) Annual Awareness Day.

ANALYSIS: This resolution makes the following legislative findings:

1. LGMD is a rare disease that is known to cause muscle weakness and wasting. It most commonly affects muscles closest to the body, known as proximal muscles, specifically the muscles of the shoulders, upper arms, pelvic area, and thighs.
2. LGMD is not one disease, but a group of hereditary, genetic, neuromuscular disorders with more than 25 subtypes currently identified.
3. LGMD occurs among all ethnic groups, affects both males and females, and can begin in childhood, adolescence, or adulthood.

1. LGMD is a progressive, serious, and debilitating condition that has a significant impact on the lives of those affected.
2. Individuals and families affected by LGMD often experience problems like diagnosis delay, difficulty finding a medical expert, and lack of access to treatments and ancillary services.
3. Many patients and families affected by LGMD bear a large share of the burden of raising public awareness to support the search for treatments.

This resolution proclaims September 30, 2017, and each September 30th thereafter, as LGMD Annual Awareness Day.

FISCAL EFFECT: Appropriation: No Fiscal Com.: No Local: No

SUPPORT: (Verified 7/5/17)

Carol Abraham, Founder, LGMD Awareness Day (co-source)

Neil Kramer, constituent (co-source)

OPPOSITION: (Verified 7/5/17)

None received

Prepared by: Melissa Ward / SFA / (916) 651-1520

7/7/17 12:45:49

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